Search

Objective: The study aimed to determine the nutritional status and its prognostic effect on the survival of patients with advanced gastrointestinal cancer. Methods: A prospective cohort study design was conducted in a tertiary hospital in Shanghai, China. The study consisted of 202 advanced gastrointestinal (GI) cancer patients from a palliative care unit. The following data were collected from the patients: biochemical indicators, i.e., anemia (hemoglobin levels), albumin, pre-albumin, C-reactive protein (CRP), and anthropometric parameters, i.e., body mass index (BMI), nutritional status by Patient-Generated Subjective Global Assessment (PG-SGA), and performance status by Karnofsky Performance Status (KPS). Severe malnutrition was confirmed with the PG-SGA score of ≥ 9. Kaplan–Meier survival analysis and the log-rank test were used to calculate overall survival (OS). The effect of nutritional status on survival was performed by Cox regression analysis. Results: Severe malnutrition was found in 71.3% of patients according to the cutoff of the PG-SGA. PG-SGA score ≥ 9, albumin level < 35 g/L, and CRP level ≥ 10 mg/L predicted shortened life expectancy. Multivariate Cox regression analysis results showed that the PG-SGA score ≥ 9 and the albumin level < 35 g/L were predictive of OS. Conclusion: Our data support that severe malnutrition is a predictor for OS in patients with advanced GI cancer. Information on nutritional status should be considered to individualize palliative care plan for these patients, and hence improve their quality of life. [ABSTRACT FROM AUTHOR]

Background: Acute episodes of agitation are frequently experienced by patients during critical illness, yet what is not understood is the experience of agitation from the patient and family perspectives. Aims and objectives: To search existing literature, appraise it and then provide a synthesized interpretation to broaden the understanding of patients' and their families' experience of agitation during an adult critical care admission. Design: Qualitative meta‐synthesis. Methods: A qualitative meta‐synthesis based on a systematic literature search registered with PROSPERO. The search conducted between July and September 2019 was applied to ProQuest, Cumulative Index to Nursing and Allied Health, British Nursing Index, Cochrane Library, Ovid Medline, Web of Science, and PsycINFO databases. We appraised the selected literature and presented a synthesized interpretation. Analysis was based on the approach of Gadamerian hermeneutics. Due to the lack of data identified; the family experiences of agitation could not be addressed within the review. Results: In total, 8 studies were included capturing the experiences of 494 patients, aged between 18 and 92 years, with 225 (45%) women. The analysis generated three core themes: (a) What is real, what is not, (b) loss of communication and dependency, and (c) what helps, what does not. Fear of death, the emotion of anxiety, and feelings of pain alongside transient periods of fluctuating conscious levels provoked a feeling of intense vulnerability. The loss of effective communication and the feeling of dependence incite agitation and distress. Conclusions: The patient's recollection of their critical illness can be completely or partially absent and disjointed with uncertainty around what is real and what is not. Family members observe the full effect of the patient's critical care illness and could be a wealth of untapped information. Relevance to clinical practice: Increasing awareness of the critically ill patients' experience of agitation highlights possible contributing factors to agitation development, such as staff interaction and communication skills, and the critical care environment. [ABSTRACT FROM AUTHOR]

Background: People who are experiencing a period of critical illness frequently experience severe agitation. The presence of agitation can pose risks to the patient, family, and clinical team. Aims and objectives: To capture the views and opinions of critical care multidisciplinary teams concerning the approaches in the management of agitation, and to understand and identify the perceived risks and benefits of current management strategies. Design: A descriptive qualitative design. Methods: Data were gathered using semi‐structured interviews with multidisciplinary teams from adult critical care units from one region in the United Kingdom. Findings: A total of 19 participants participated between February to September 2017. There were two group interviews (GIs) (n = 12, GI 1 n = 8, GI 2 n = 4) and seven one‐to‐one interviews, across four hospital organisations with one participant working via an agency. The mean length (± SD) of each interview, one to one or group, was 58.86 minutes (5.81 minutes). Three major themes were generated about the complex clinical decision‐making required to manage an agitated patient. These themes represented: the burden of care, continuity of clinical decision‐making, and uncertainty and indecision experienced by participants. Conclusion: Participants described caring for an agitated patient as challenging and stressful. Staff sought clarification on what level of restrictive practice is allowed. Feelings of anxiety and stress generated by the decisions made may have an impact on staff, particularly those who are more inexperienced, which in the longer term could lead to fatigue or moral distress. Relevance to clinical practice. The study has emphasised the challenges faced by multidisciplinary teams and how decision‐making may impact on individuals within the team. [ABSTRACT FROM AUTHOR]

Background and aims: Dyspnoea-12 assesses dyspnea based on the physical and affective components of the symptom. The aim of this study was to translate the Dyspnoea-12 into Portuguese, and to obtain validation data regarding the use of this tool in patients with chronic obstructive lung disease (COPD). Methods: The English version of the scale Dyspnoea-12 underwent a formal translation process into Portuguese as spoken in Brazil with the final version being called Dyspnoea-12-Pt. The latter was applied to 51 Portuguese-speaking patients with COPD (33 men; age: 66.4±8.1 years; FEV1: 48.7%#177;17.2% pred). Participants also completed the Medical Research Council dyspnea scale (MRC), the Baseline Dyspnea Index (BDI), the Hospital Anxiety and Depression scale, the Saint George's Respiratory Questionnaire (SGRQ) and performed spirometry and the Six-Minute Walk Test (6 MWT). Forty-five volunteers in stable clinical conditions also completed the Dyspnoea-12-Pt scale approximately 2 weeks after the first evaluation. Results: Dyspnoea-12-Pt showed significant correlations with the scales MRC (r=0.494), BDI (r=20.511), SGRQ (r=0.806), Anxiety (r=0.471), Depression (0.414) and walked distance in the 6 MWT (r=0.329). Cronbach's alpha of Dyspnoea-12-Pt total was 0.921 and the intraclass correlation coefficient between sequential measures was 0.829. Conclusion: The scale Dyspnoea-12-Pt exhibits acceptable psychometric properties and may be used as an evaluation tool of dyspnea in Portuguese speaking COPD patients. [ABSTRACT FROM AUTHOR]

Aims and objective: To critically review the evidence relating to the management of agitation within the Adult Critical Care Unit environment and identify any risks and benefits of current management strategies. Background: Admission to an Adult Critical Care Unit can be traumatic and potentially life altering for the patient. Patient agitation is common in Adult Critical Care Units and is associated with the potential for harm. Despite inherent safety risks, there is a paucity of evidence‐based guidance underpinning the care of agitation in patients with critical illness. Study Design: Integrative review and narrative synthesis. Methods: A systematic procedure for searching and selecting the literature was followed and applied to databases including CINAHL, British Nursing Index, Cochrane Library, ProQuest, Ovid including EMBASE and MEDLINE. Selected manuscripts were analysed using a structured narrative review approach. Results: A total of 208 papers were identified and following a systematic deselection process 24 original articles were included in the review. It was identified that agitation in the setting of Adult Critical Care Unit is associated with high‐risk events such as unplanned removal of life‐supporting devices. There were consistent links to sepsis, previous high alcohol intake and certain medications, which may increase the development of agitation. Prompt assessment and early liberation from mechanical ventilation was a major contributing factor in the reduction in agitation. Administration of antideliriogenic mediation may reduce the need for physical restraint. There was repeated uncertainty about the role of physical restraint in developing agitation and its effective management. Conclusions: Our review has shown that there is a dearth of research focusing on care of agitated patients in the Adult Critical Care Unit, despite this being a high‐risk group. There are dilemmas for clinical teams about the effectiveness of applying physical and/or pharmacological restraint. The review has highlighted that the risk of self‐extubation increases with the presence of agitation, reinforcing the need for constant clinical observation and vigilance. Relevance to clinical practice: The importance of ensuring patients are re‐orientated regularly and signs of agitation assessed and acted upon promptly is reiterated. Early identification of specific patient profiles such as those with previous high alcohol or psychoactive drug habit may enable more proactive management in agitation management rather than reactive. The prompt liberation from the restriction of ventilation and encouragement of family or loved ones involvement in care need to be considered. [ABSTRACT FROM AUTHOR]

Objectives: Evidence for the efficacy of Cognitive Behavioural Therapy (CBT) in asthma is developing but it is not known if this translates to benefits in severe asthma or if a group approach is acceptable to this patient group. This study aimed to assess the feasibility and acceptability of Group-CBT in severe asthma.Method: This was a two-centre, randomised controlled parallel group feasibility study. Eligible participants (patients with severe asthma and a clinically significant diagnosis of anxiety and/or depression – Hospital Anxiety and Depression Scale (HAD) score greater than 8 for the anxiety or depression sub-scale) received Group-CBT in weekly sessions for eight consecutive weeks and usual care or usual care only. Follow-up was for 16 weeks and end points were: Asthma Quality of Life Questionnaire, Asthma Control Questionnaire, HAD, Dyspnoea-12, EuroQual-5D and EuroQuol-VAS.Results: 51 patients were randomised: 36% (51 out of 140) consent rate and attrition at week 16 was 12. Screening logs indicated that study take-up was influenced by patients living long distances from the treatment centre and inability to commit to the weekly demands of the programme. Drop-out was higher in Group-CBT compared due to inability to commit to the weekly programme because of poor health. Participants who contributed to focus group discussions reported that Group-CBT contributed to a better understanding of their illness and related approaches to anxiety management and acceptance of their asthma condition. Although weekly face-to-face sessions were challenging, this was the preferred method of delivery for these participants.Conclusions: This feasibility study shows that Group-CBT warrants further investigation as a potentially promising treatment option for patients with severe asthma. It has been possible but not easy to recruit and retain the sample. Options for a less demanding intervention schedule, such as less frequent face-to-face visits and the use of web-based interventions, require careful consideration. [ABSTRACT FROM PUBLISHER]

Context: The Dyspnea-12 (D-12) Questionnaire is a well-validated instrument in respiratory illnesses for breathlessness assessment, but its psychometric properties have not been tested in lung cancer.Objective: To demonstrate the psychometric properties of the D-12 in lung cancer patients.Methods: Baseline data from a lung cancer feasibility trial were adopted for this analysis. D-12 and a series of patient-reported tools, including five Numeric Rating Scales (NRS), the Hospital Anxiety and Depression Scale (HADS), and the Lung Cancer Symptom Scale (LCSS), were used for the psychometric assessment. Spearman's correlation coefficients (rs) were used to estimate the convergent validity of the D-12 with the NRS, HADS, and LCSS. Exploratory factor analysis was performed to examine construct validity. Reliability was tested by Cronbach's alpha and item-to-total correlations. D-12 score difference between patients with or without anxiety, depression, and chronic obstructive pulmonary disease (COPD) was explored to identify its discriminate performance.Results: One hundred and one lung cancer patients were included. There were significantly positive correlations between the D-12 and the HADS, LCSS, and NRS measuring breathlessness severity and its associated affective distress. Factor analysis clearly identified two components (physical and emotional) of the D-12. Cronbach's alpha for D-12 total, physical, and emotional subscales was 0.95, 0.92, and 0.94, respectively. Patients with anxiety or depression demonstrated significantly higher D-12 scores than those without it, and patients with COPD reported significantly more severe breathlessness than those without COPD.Conclusion: The D-12 is a valid and reliable self-reported questionnaire for use in breathlessness assessment in lung cancer patients. [ABSTRACT FROM AUTHOR]

Background: acute medicine units (AMUs) are part of acute hospital care, where length of patient stay is short and turnover is high. Expediting patient discharge safely is a major function of AMUs, which need up-to-date bespoke guidance. Aim: to carry out a scoping review of UK discharge policy to critically consider, compare and contrast the relevant discharge policies and guidance that underpin the assessment of acute patient discharge. Objectives: to inform the production of bespoke patient discharge guidance for AMUs. Design and stages: identify the review questions; identify relevant studies; select the studies; chart the data; collate, summarise and report the results. Findings: 28 patient discharge policy guidelines were identified that had no specific guidance for patient discharge from AMUs. New bespoke principles for AMUs were created through a pragmatic interpretation of current relevant policies. Conclusion: there is a gap in specific patient discharge guidance for AMUs. New guidance should contribute in practice to improve patient discharge. [ABSTRACT FROM AUTHOR]

Background: Breathlessness, cough and fatigue are distressing symptoms for patients with lung cancer. There is evidence that these three symptoms form a discreet symptom cluster. This study aimed to feasibly test a new non-pharmacological intervention for the management of the Respiratory Distress Symptom Cluster (breathlessness-cough-fatigue) in lung cancer.Method: This was a multi-centre, randomised controlled non-blinded parallel group feasibility trial. Eligible patients (patients with primary lung cancer and 'bothered' by at least two of the three cluster symptoms) received usual care plus a multicomponent intervention delivered over two intervention training sessions and a follow-up telephone call or usual care only. Follow-up was for 12 weeks, and end-points included six numerical rating scales for breathlessness severity, Dyspnoea-12, Manchester Cough in Lung Cancer scale, FACIT-Fatigue scale, Hospital Anxiety and Depression scale, Lung Cancer Symptom Scale and the EQ-5D-3L, collected at baseline, week 4 and week 12.Results: One hundred seven patients were randomised over 8 months; however, six were removed from further analysis due to protocol violations (intervention group n = 50 and control group n = 51). Of the ineligible patients (n = 608), 29 % reported either not experiencing two or more symptoms or not being 'bothered' by at least two symptoms. There was 29 % drop-out by week 4, and by week 12, a further two patients in the control group were lost to follow-up. A sample size calculation indicated that 122 patients per arm would be needed to detect a clinically important difference in the main outcome for breathlessness, cough and fatigue.Conclusions: The study has provided evidence of the feasibility and acceptability of a new intervention in the lung cancer population and warrants a fully powered trial before we reach any conclusions. The follow-on trial will test the hypothesis that the intervention improves symptom cluster of breathlessness, cough and fatigue better than usual care alone. Full economic evaluation will be conducted in the main trial. [ABSTRACT FROM AUTHOR]

Objective: To develop a measure of the needs injured children and their families' needs throughout recovery; The MAnchester Needs Tool for Injured Children (MANTIC). Design: Tool development, psychometric testing. Setting: Five children's major trauma centres in England. Participants: Children aged 2 to 16 years with any type of moderate/severe injury(ies) treated in a major trauma centre within 12 months of injury, plus their parents. Methods: Stage 1a (Item generation) : Interviews with injured children and their parents to generate draft items. Stage 1b (Co-production) : Feedback about item clarity, relevance and appropriate response options was provided by parents and the patient and public involvement group. Stage 2 (Psychometric development) : Completion of the prototype MANTIC by injured children and their parents with restructuring (as necessary) to establish construct validity. Concurrent validity was assessed by correlation with quality of life (EQ-5D-Y). MANTICs were repeated 2 weeks later to assess test–retest reliability. Results: Stages 1a,b : Interviews (13 injured children, 19 parents) generated 64 items with semantic differential four-point response scale (strongly disagree, disagree, agree, strongly agree). Stage 2 : One hundred and forty-four participants completed MANTIC questionnaires (mean age 9.8 years, SD 3.8; 68.1% male). Item responses were strong requiring only minor changes to establish construct validity. Concurrent validity with quality of life was moderate (r = 0.55, P < 0.01) as was test–retest reliability (ICC = 0.46 and 0.59, P < 0.001). Uni-dimensionality was strong (Cronbach's α > 0.7) Conclusion: The MANTIC is a feasible, acceptable, valid self-report measure of the needs of injured children and their families, freely available for clinical or research purposes. [ABSTRACT FROM AUTHOR]

Little is known about the impact of living with pulmonary hypertension. This paper reports data exploring the experience of living with pulmonary hypertension. Qualitative, semistructured, one-to-one interviews were conducted in participants' homes to understand their experiences of living with pulmonary hypertension. Thematic analysis was used to identify codes and generate themes from the interview data. The identification of initial codes was conducted independently by the first author, and checked by the second. Thirty patients recruited through the pulmonary hypertension descriptions of living with pulmonary hypertension are presented under five themes that center on the invisibility of pulmonary hypertension, and its complex treatment are presented: (i) living with a hidden illness; (ii) being on a symptomology rollercoaster; (iii) expectations from treatments; (iv) treatment burden; and (v) awareness of financial burden of treatments. Key findings included daily challenges of living with a rare condition that is largely 'hidden' and its related complex treatment regimes. People with pulmonary hypertension would benefit if more healthcare professionals, as well as family and friends, would validate their condition and provide them with appropriate support. [ABSTRACT FROM AUTHOR]

Breathlessness is a cardinal symptom of pulmonary arterial hypertension (PAH); yet no breathlessness instrument has been previously tested for reliability and validity for this population. Using a cross-sectional design, we tested the psychometric properties of the Dyspnoea-12 (D-12), for the assessment of breathlessness in PAH. Pearson’s correlations with World Health Organization functional class (WHO FC), Minnesota Living with Heart failure – pulmonary hypertension modified version (MLHF-PH), Hospital Anxiety and Depression scale (HADS) and 6-minute walk distance test (6MWD) were conducted. Participants (n = 176) were mostly female (70.5%), mean age 54.3±14 years; diagnosed with idiopathic PAH (48.9%), congenital heart disease (27.8%) and connective tissue disease (23.3%); and most were WHO FC II (32.4%) and III (52.3%). The D-12 showed excellent internal consistency for the total and two-component scores for physical and emotional (Cronbach’s α 0.95, 0.93 and 0.94, respectively). D-12 total score was significantly associated with MLHF-PH (r = 0.70), HADS (anxiety r = 0.54 and depression r = 0.68), WHO FC (r = 0.49), and 6MWD (r = -0.26). In patients with PAH, the D-12 - a short patient reported measure of breathlessness severity that taps the physical and emotional components, is a reliable and valid instrument. [ABSTRACT FROM AUTHOR]

The purpose of this study was to describe the impact of breathlessness on Jordanian patients with chronic obstructive pulmonary disease ( COPD) and their spouses' perception of the patients' breathlessness. A cross-sectional, descriptive, correlational design was used with a sample of 67 Jordanian patients with COPD related breathlessness and their spouses. The Dyspnoea 12 Scale ( D-12) and Hospital Anxiety and Depression Scale ( HADS) were administered to both patients and spouses. There was a significant positive correlation between total patients' D-12 scores and total HADS scores. Spouses who perceived the patients to have more severe breathlessness affect ( D-12 affect subscale) were more likely to experience a higher level of psychological distress ( HADS total). Both patients and spouses reported clinically significant levels of anxiety and depression. There was no statistical difference in total D-12 and HADS scores between COPD patients and their spouses. The finding of this study indicates the importance of healthcare providers in supporting both patients with breathlessness and their spouses and the need to develop family-centred services. [ABSTRACT FROM AUTHOR]

yorke j., horton m. & jones p. w. (2012) A critique of Rasch analysis using the Dyspnoea-12 as an illustrative example. Journal of Advanced Nursing 68(1), 191-198. Abstract Aim. This paper is a report of a study of the application and critique of Rasch analysis to the development of the Dyspnoea-12 questionnaire; an instrument that measures breathlessness severity. Background. The development of questionnaires has traditionally involved application of classical test theory. Rasch analysis has gained international momentum as a robust application of 'modern' psychometric testing for the development of new instruments and the refinement of existing ones. Method. A total of 358 patients [mean age 62 ( sd = 8); chronic obstructive pulmonary disease = 123, interstitial lung disease = 129, heart failure = 106], responded to an initial list of 81 items (between May 2006 and February 2008). Hierarchical modelling reduced the list to 34 items. Rasch analysis was used to inform decisions about further item removal and fit to the unidimensional model. Rasch analysis included tests of item response appropriateness, item residual, differential item functioning (including gender and diagnosis) and unidimensionality. Results. Twenty-two items failed to reach the requirements of the Rasch model and were removed. Reasons included high residuals and item bias associated with gender and diagnosis. The 12-items conformed to the Rasch unidimensional parameters (number of statistically significant t-tests 6·7%; confidence interval: 4·4-9·0%). Conclusion. We have presented the steps involved in reducing and refining a large item-set by identifying those items which possessed the most reliable measurement properties. The Dyspnoea-12 is reliable and simple to use and should find utility in both practice and research settings. We recommend that nurses consider Rasch analysis in the development of health-related questionnaires. [ABSTRACT FROM AUTHOR]

Background. Dyspnea is a prominent symptom in asthma. The Dyspnea-12 (D-12), an instrument that quantifies breathlessness using 12 descriptors that tap the physical and affective aspects, has shown promise for the measurement of dyspnea in cardiorespiratory disease. Objective. We report the results of a study designed to test the validity and reliability of the D-12 in a population of patients with asthma. Methods. This cross-sectional study included 102 patients with asthma. Subjects completed the D-12, Hospital Anxiety and Depression scale, St. George's Respiratory Questionnaire (SGRQ), and Medical Research Council scale. Confirmatory factor analysis confirmed the two-component structure of the D-12 (i.e., seven items that tap the physical aspects of breathlessness and five items that tap the affective aspects). Results. The D-12 subscales had excellent internal reliability (Cronbach's alpha for the "physical" score was 0.94 and the affective score was 0.95). The D-12 physical component was more strongly correlated with SGRQ Symptoms ( r = 0.648), SGRQ Activities ( r = 0.635) and Medical Research Council grade ( r = 0.636), while the affective component was more strongly correlated with SGRQ Impacts ( r = 0.765) and Hospital Anxiety and Depression scale scores (anxiety r = 0.641 and depression r = 0.602). Conclusion. This study supports validity of the D-12 for use in the assessment of dyspnea of patients with asthma. It assesses one of the most pertinent symptoms of asthma from two viewpoints--physical and affective. [ABSTRACT FROM AUTHOR]

The article discusses a study which assessed the validity and reliability of the Dyspnea-12 questionnaire (D-12) for the assessment of breathlessness in patients with interstitial lung disease (ILD). The study included 101 patients with ILD who completed D-12. Study authors concluded that D-12 is a reliable and valid tool to measure the severity of dyspnea in patients with ILD.

ABSTRACT Waves of psychological research over 50 years have resulted in the development of scales to measure psychological resilience. Multiple psychological resilience definitions and factors have emerged during this time, making its measurement complex. The overall aim of the review was to identify and describe developments in the measurement of psychological resilience in the clinical mental healthcare setting. Specific objectives included (1) consideration of the validity and reliability of psychological resilience scales, (2) the effectiveness of the scales in clinical mental healthcare settings and (3) to identify the scope that resilience factors are addressed in the included scales. It provides a timely update regarding psychological resilience measurement tools and considers further developments that may be required. Between 2011 and 2024, databases were searched, and English‐language, peer‐reviewed papers with full text were extracted. Eligible studies were those reporting validated existing resilience measures or the outcomes of new measures for use in clinical mental healthcare settings. Seventeen studies met the inclusion criteria. The review demonstrated that psychological resilience measures require further development, particularly focusing on the utility of measurement tools in clinical mental healthcare settings. In this review, we highlight an existing gap in resilience measurement and underscore the need for a new measure of psychological resilience that can effectively assess individuals' subjective experience of their psychological resilience in clinical mental healthcare settings. The currently available psychological resilience measures included in this review do not directly reflect all the factors that might impact a client's depression or anxiety and warrant further research. [ABSTRACT FROM AUTHOR]

• Lung cancer screening attendees overestimate personal and population absolute risk. • Actual risk correlates with perceived comparative risk, not perceived absolute risk. • Women have higher risk perception, lung cancer worry and general anxiety than men. • Family history of lung cancer is an important driver of perceived risk. • Lung cancer survival is overestimated and some risk factors are not well recognised. In England, a risk-based approach is used to determine eligibility for lung cancer screening. Ensuring effective communication and counselling of risk is therefore increasingly important. In this study, we explore the perception of lung cancer risk in attendees of a community-based screening service, located in socio-economically deprived areas of Manchester. We analyse responses based on demographic variables, calculated risk score and screening eligibility. The Manchester Lung Health Check (LHC) programme invited ever smokers, age 55–80, to a lung cancer risk assessment in which their 6-year risk was calculated (using the PLCO M2012 model). Those at high risk (PLCO M2012 score ≥ 1.51%) were eligible for low dose CT (LDCT) screening. Prior to their assessment, attendees were invited to complete the study questionnaire, which assessed absolute and comparative risk perception, disease knowledge (incidence, survival, and risk factors), lung cancer specific worry, and mental health. 371 participants completed the questionnaire; 66% (n = 243) had linked clinical data. Perceived absolute risk was markedly higher than calculated risk (median: 20% vs. 1%; p < 0.001) and higher in women than men (25% vs. 15%; p = 0.001). There was no correlation between perceived absolute and calculated risk. Overall, 30% classified themselves at higher, and 21% at lower, lung cancer risk compared to others their age. Median PLCO M2012 score increased with perceived comparative risk (p = 0.004). Those eligible for screening were more likely to: classify themselves at higher comparative risk (41% vs. 21%; p < 0.0001), report lung cancer-specific worry (27% vs. 10%; p = 0.001) and have indications of depression (20% vs. 10%; p = 0.05). Family history of lung cancer was significantly associated with higher comparative risk (adj OR 4.03, 95%CI 1.74–9.3; p = 0.001). Employing comparative rather than absolute risk may assist risk counselling. Further research is required to determine the optimal approach to risk communication in this setting. [ABSTRACT FROM AUTHOR]

Objectives: This systematic review and meta-analysis aimed to assess the effectiveness of creative arts therapy (CAT) interventions on the health outcomes of adult patients with cancer. Methods: A comprehensive search was conducted in six databases from their inception to June 10, 2023, with no restrictions on sex, age, cancer type, cancer stage, or treatment type. The Cochrane Risk of Bias (RoB2) tool for randomized controlled trials (RCTs) and the equivalent tool for non-RCTs (ROBINS-I) were used to assess the risk of bias. Meta-analyses were conducted to pool estimates of the effects of CAT on patients’ health-related outcomes. A narrative synthesis of outcomes was performed where meta-analysis was not appropriate. Results: A total of 25 studies (8 RCTs and 17 quasi-RCTs) involving 1489 cancer patients and survivors were included in the final data analysis. Most studies focused on patients with mixed cancer diagnoses who were undergoing active chemotherapy treatment. Most studies utilized painting, drawing, and/or sculpting as CAT interventions. The overall risk of bias in the included studies was moderate to high. Meta-analysis demonstrated a significant improvement in quality of life (SMD with 95% CI = 17.50, 10.05–24.95, P =.0000) and the social aspect of quality of life in cancer patients (SMD with 95% CI = 03.1 (0.06-0.55), P =.01), but no significant effects were found for depressive symptoms and coping strategies among patients who participated in CAT compared to control groups. Narrative analysis and non-RCTs suggested the potential of CAT in reducing levels of depression and anxiety, as well as improving self-image, hope, emotional expression/state, and processing in patients with cancer. However, inconsistent findings were reported regarding the effectiveness of CAT interventions on fatigue, spirituality, and psychosomatic distress/symptom intensity. Conclusion: The findings indicated significant and potential benefits of CAT for individuals with cancer, primarily related to quality of life. However, caution is needed in interpreting these findings due to limitations in the methodologies utilized in the included studies. Further large-scale RCTs are needed to examine the effectiveness of CAT on health outcomes, particularly in relation to self-image, hope, and emotional expression/state and processing among patients with cancer or those in palliative care. [ABSTRACT FROM AUTHOR]

Background: Our aim was to develop a validated Patient Reported Experience Measure (PREM) to capture patient and carer experience during participation in experimental cancer medicine trials (ECM): called PREM-ECM. Methods: Mixed method design, consisting of four stages. Questionnaire items were produced for both patients and carers using interviews, focus groups, and cognitive interviews with patients and carers separately. For both patient and carer PREMs, a cross-sectional questionnaire study was conducted to identify final items for inclusion using hierarchical item reduction and Rasch analysis. Questionnaire validity and reliability were assessed, including administration feasibility. Results: Initial interview participants suggested the need for three PREMs, two specific to patients: (i) a 'prior' questionnaire that captured experiences of trial introduction, screening, consenting, and early trial experience (< 6 weeks post consent); and (ii) 'on-trial' that captured experiences of ongoing consent and trial participation; and (iii) a PREM specific for carers. The draft 25-item 'prior' questionnaire was completed by 162 patients and 162 patients completed the draft 35-item 'on-trial' questionnaire. Hierarchical and Rasch analysis produced a 14-item 'prior' list and a 15-item list for 'on-trial'. Both patient PREM's demonstrated a good fit to the Rasch model following Bonferroni correction (X2p = 0.008). The carer 34-draft item questionnaire was completed by 102 participants. Hierarchical and Rasch analysis produced a 13-item list for PREM-ECM-Carer, with good fit to the Rasch model (X2p = 0.62). The pilot testing demonstrated the feasibility of all the PREMs in capturing patient and caregiver experiences in routine clinical settings. Conclusions: The three PREM-ECM questionnaires will be the first validated experience measures for ECM trial patients and their carers. These questionnaires may be used to assess patients' and their carers' experiences of ECM and enable robust comparisons across cancer trial units highlighting areas for service improvement. [ABSTRACT FROM AUTHOR]

Background Adolescent and young adult (AYA) survivors of a central nervous system (CNS) tumor represent a vulnerable group who can experience: social isolation, low rates of employment, and achieving independence can be compromised, leading to poorer quality of life compared with survivors of other cancer types. The aim of this study is to develop and evaluate the validity of a needs assessment tool (NAT) for AYA survivors of a CNS tumor. Methods Items generated using data from 29 qualitative studies and cognitive interviews (n = 8) produced NAT V1.1 (49 items). 128 of 316 eligible participants attending neuro-oncology clinics at 4 NHS sites between June 2022 and March 2023 completed the NAT V1.1 to allow for item reduction and refinement and to evaluate reliability and validity. A pilot study (n = 6) using YOU-CAN in routine follow-up concluded the study. Results Hierarchical analysis and Rasch analysis identified 18- and 15-items for removal, respectively. YOU-CAN, comprised of the remaining 16 items, demonstrates excellent test-retest reliability (intra-class correlation coefficient, 0.901, n = 40) and sufficient correlation with the European Quality of Life questionnaire and Supportive Care Needs Survey (Pearson r  = 0.433 and 0.590, respectively). Pilot testing showed YOU-CAN triggered discussions of unmet needs in consultations and highlighted the importance of multidisciplinary support. Conclusions YOU-CAN is a valid and reliable instrument containing items related to concerns about physical and emotional health; family and relationships; self-acceptance; and independence. Future efforts should examine YOU-CAN's feasibility, and develop guidance for managing unmet needs. Routine use of YOU-CAN may improve the identification of otherwise undiscussed unmet needs and opportunities to deliver personalized support. [ABSTRACT FROM AUTHOR]

Objective: To explore the experiences of children and families after a child's traumatic injury (Injury Severity Score >8). Design: Qualitative interview study. Setting: Two children's major trauma centres in England. Participants: 32 participants: 13 children with traumatic injuries, their parents/guardians (n = 14) and five parents whose injured child did not participate. Methods: Semi-structured interviews exploring the emotional, social, practical and physical impacts of children's injuries, analysed by thematic analysis. Results: Interviews were conducted a median of 8.5 months (IQR 9.3) post-injury. Injuries affected the head, chest, abdomen, spine, limbs or multiple body parts. Injured children struggled with changes to their appearance, physical activity restrictions and late onset physical symptoms, which developed after hospital discharge when activity levels increased. Social participation was affected by activity restrictions, concerns about their appearance and interruptions to friendships. Psychological impacts, particularly post-traumatic stress type symptoms often affected both children and parents. Parents' responsibilities suddenly increased, which affected family relationships and roles, their ability to work and carry out daily tasks. Rapid hospital discharge was wanted, but participants often felt vulnerable on return home. They valued continued contact with a healthcare professional and practical supports from family and friends, which enabled resumption of their usual lives. Conclusions: Injured children experience changes to their appearance, friendships, physical activity levels and develop new physical and mental health symptoms after hospital discharge. Such challenges can be addressed by the provision of advice about potential symptoms, alternative activities during recovery, strategies to build resilience and how to access services after hospital discharge. [ABSTRACT FROM AUTHOR]

Background: People with severe asthma experience frequent life-threatening acute asthma events. A Lancet commission recently highlighted that terms "exacerbations" and "flare-ups" are seen to trivialize these episodes and recommended use of the term "attacks." Clinicians however, preferentially use the term "exacerbation" and some guidelines recommend the use of "exacerbation" with patients. Objective: This descriptive qualitative study aimed to understand the patient's experience and perspectives of these events and language used to describe them. Methods: Semi-structured one-on-one interviews were conducted in Australia and the UK in 18 people with severe asthma and 10 with mild-moderate asthma regarding their usage and preferences for such terminologies. Additionally, nine people with severe asthma participated in two focus groups in which use of preferred terminology was explored. Results: Mean age of participants was 57 ± 14.03 yr and 65% were female. A total 67 quotes were recorded in which 16 participants with severe asthma spontaneously used either the term "attack," "flare-up" and/or "exacerbation." Of these quotes, all 16 participants used "attack," one used all three terms and two used both "exacerbation" and "attack." The term "attack" was used to describe frightening events having major impacts on participant's lives, whereas "exacerbation" and "flare-up" were used to refer to both severe and mild, transient asthma-related events. Conclusion: Usage of the term "attack" was preferred by patients with severe asthma. Adoption of this language may assist in patient-clinician communication and disease management and outcomes. Wider stakeholder engagement is needed to confirm this suggestion. FEV1 forced expiratory volume in 1 second ATS American Thoracic Society ERS European Respiratory Society ACQ Asthma Control Questionnaire ICS inhaled corticosteroids OCS oral corticosteroids BTS British Thoracic Society SIGN Scottish Intercollegiate Guidelines Network WAP written action plan. [ABSTRACT FROM AUTHOR]

The risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. 'Reaching a diagnosis of cancer' describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. 'Adjusting to the cancer diagnosis when living with dementia' outlines a variety of emotional and practical responses to receiving news of the diagnosis. 'Weighing up the cancer treatment options' highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. 'Undergoing cancer treatment' shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through. [ABSTRACT FROM AUTHOR]

Background: The review aimed to investigate geographic and sociodemographic factors associated with receipt of systemic anticancer therapies (SACT) for women with secondary (metastatic) breast cancer (SBC). Methods: Included studies reported geographic and sociodemographic factors associated with receipt of treatment with SACT for women > 18 years with an SBC diagnosis. Information sources searched were Ovid CINAHL, Ovid MEDLINE, Ovid Embase and Ovid PsychINFO. Assessment of methodological quality was undertaken using the Joanna Briggs Institute method. Findings were synthesised using a narrative synthesis approach. Results: Nineteen studies published between 2009 and 2023 were included in the review. Overall methodological quality was assessed as low to moderate. Outcomes were reported for treatment receipt and time to treatment. Overall treatment receipt ranged from 4% for immunotherapy treatment in one study to 83% for systemic anticancer therapies (unspecified). Time to treatment ranged from median 54 days to 95 days with 81% of patients who received treatment < 60 days. Younger women, women of White origin, and those women with a higher socioeconomic status had an increased likelihood of timely treatment receipt. Treatment receipt varied by geographical region, and place of care was associated with variation in timely receipt of treatment with women treated at teaching, research and private institutions being more likely to receive treatment in a timely manner. Conclusions: Treatment receipt varied depending upon type of SACT. A number of factors were associated with treatment receipt. Barriers included older age, non-White race, lower socioeconomic status, significant comorbidities, hospital setting and geographical location. Findings should however be interpreted with caution given the limitations in overall methodological quality of included studies and significant heterogeneity in measures of exposure and outcome. Generalisability was limited due to included study populations. Findings have practical implications for the development and piloting of targeted interventions to address specific barriers in a socioculturally sensitive manner. Addressing geographical variation and place of care may require intervention at a commissioning policy level. Further qualitative research is required to understand the experience and of women and clinicians. Systematic review registration: PROSPERO CRD42020196490 [ABSTRACT FROM AUTHOR]

The author reflects on the analogy of dyspnoea and pain. She notes that the similarities between pain and dyspnoea are the most prominent in relation to affect because they are unpleasant and evoke emotions that motivate behaviour. She suggests to develop an instrument for multidimensional dyspnoea assessment due to the recognition that it comprises multiple component sensations and has distinguishable sensory and affective dimensions.

Introduction: Adoptive cell therapy (ACT) is a rapidly evolving field. Patient-reported outcomes (PROs) allow patients to report the impact of treatment on their quality of life during and after treatment. The systematic review aims to characterise the breadth of PROs utilised in ACT cancer care and provide guidance for the use of PROs in this patient population in the future. Methods: A systematic search was conducted (MEDLINE, PsycINFO, Embase and CINAHL) in August 2021 by two reviewers. Search terms covered the following: "adoptive cell therapy", "patient-reported outcomes" and "cancer". Studies were included if they used a PRO measure to report the impact of ACT. The methodological quality of PROs was assessed. Forward and backward reference searching was conducted of any relevant papers. A quality grading scale was applied based on Cochrane and Revenson criteria for classification of high-quality studies. Key data from the studies and the included PROs was extracted by two researchers and tabulated. Results: One-hundred nine papers were identified; 11 papers were included. The majority of studies were single-arm trials or observational studies. Twenty-two different PROs were identified; none was ACT specific. The PROMIS-29 and EQ-5D were most commonly used. Few studies collected PRO data in the first 1–2 weeks. Four studies followed patients up for over a year, and a further four studies followed patients for approximately 3 months. Discussion: None of the PROs identified have been designed specifically for ACT. Appropriateness of existing instruments should be considered. It should be considered whether it is appropriate to collect data more frequently in the acute stage and then less frequently during follow-up. It should be considered if one tool is suitable at all time points or if the tool should be adapted depending on time since treatment. More research is needed to identify the exact timings of PRO assessments, and qualitative work with patients is needed to determine the most important issues for them throughout the treatment and follow-up. [ABSTRACT FROM AUTHOR]

Background: US-based evidence suggests that lay-health worker (LHW) interventions can increase awareness around cancer risk-related lifestyles, symptom recognition, and screening programme uptake. The suitability of LHW interventions in the UK and the potential barriers and facilitators for implementation is currently unknown. This study explored the acceptability and feasibility of developing LHW interventions for cancer prevention, screening, and early diagnosis.Methods: Purposive sampling recruited 5 separate lay groups: (1) completed cancer treatment; (2) friends/family of cancer patients; (3) cancer hospital volunteers; (4) cancer charity volunteers; and (5) members of the public. Audio-recorded focus groups and semi-structured interviews were transcribed for thematic analysis using framework matrices.Results: Forty-one people (66% female, aged 23-84 years) participated. Three main themes are reported: (1) scope of LHW roles, with a clear remit embedded within communities or primary care practices; (2) defining LHW tasks, with a focus on supporting people overcome barriers including lack of cancer symptom knowledge and non-attendance at screening; and (3) clear boundaries, with LHW training and on-going support from healthcare staff seen as key for intervention success. All groups were uncomfortable about having lifestyle-related risk conversations and potentially inflicting guilt. The post-treatment group expressed less concern about the possible emotional impact of discussing cancer symptoms, compared with the other groups.Conclusions: LHW interventions to promote early diagnosis or screening were generally considered acceptable in a UK context. LHW interventions focussing on reducing cancer risk may be less feasible. [ABSTRACT FROM AUTHOR]

Purpose: Enabling cancer patients to self-manage symptoms through mobile applications can result in more informed, autonomous patients who are partners in their care, consequently reducing the burden on health services. Electronic patient reported outcomes completed before a clinical review can increase the frequency and quality of holistic assessments, while integration into electronic health records can maximise clinical utility. The ability of apps to integrate with electronic health records is key to providing a real-time interface between patient reports and healthcare response. This review identifies patient-facing cancer apps which can record patient reported outcomes, and explores their purpose, functionality, quality, and ability to integrate with electronic health records.Methods: A systematic app review and content synthesis was conducted on patient-facing cancer apps available in the United Kingdom. Where applicable, the review aligned with the Preferred Reporting Items for Systematic Reviews and meta-Analysis. Two validated scales assessed functionality and quality: The IMS Institute for Healthcare Informatics functionality score and the Mobile App Rating Scale. Flesch-Kincaid metrics explored readability.Results: Apple App and Google Play stores identified 405 apps, of which 12 met the eligibility criteria. All were free to download, 1 (8%) had in-app purchases/subscriptions. Nine (75%) were affiliated with a professional health body/charity. Six (50%) analysed inputted data and provided medical advice based on answers. The average Flesch Reading Ease score was 42.7 out of 100. The apps had an average of 7.3 functions each and a mean MARS score of 4/5. None integrated with electronic health records.Conclusion: While many cancer apps exist, few enable patient reported outcomes to be recorded and shared with clinicians in real-time. Further research is warranted to explore the feasibility of integrating with electronic health records, as this function can improve patient experience and outcomes, and increase efficiency of hospital resources through more proactive care. [ABSTRACT FROM AUTHOR]

Purpose: The study explores experiences of lung cancer patients during COVID-19 and considers how changes to care delivery and personal lives affected patient needs. Methods: Semi-structured telephone interviews were conducted to explore experiences of lung cancer patients during COVID-19. Interviews were audio-recorded, transcribed verbatim and analysed thematically. Interview participants were purposively selected based on age, gender, treatment status, timing of diagnosis (pre/post first COVID-19 lockdown) from a sample of lung cancer patients (any histological subtype/any cancer stage/any point in treatment) who had completed a questionnaire exploring how participants' lives were impacted by the pandemic and their thoughts on clinical care and remote communication. Results: Thirty lung cancer patients who participated in the questionnaire study were approached and participated in an interview. Three themes were identified: (1) Adapting to new modes of communication (focusing on experiences of remote communication); (2) Experience of care delivery during the pandemic (describing how all aspects of care delivery had been affected); (3) Impact of the COVID-19 pandemic on quality of life (QOL) (focus on the psychological impact and feeling of reduced support). Themes 1 and 2 are heavily interlinked and both had bearing on patients' QOL experience. Conclusion: Lung cancer patients were impacted psychologically by changes to care delivery and changes in their personal life. The findings highlight some benefits to remote consultations but the stage of the treatment pathway and illness trajectory should be considered when determining if this is appropriate. Participants felt support from peers, family and friends was limited during the pandemic. [ABSTRACT FROM AUTHOR]

Background: Anxiety and depression are comorbidities of severe asthma. However, clinical characteristics associated with coexisting severe asthma and anxiety/depression are poorly understood. The study objective is to determine clinical characteristics associated with anxiety and depressive symptoms in severe asthma. Methods: Severe asthma participants (N = 140) underwent a multidimensional assessment. Categorization of symptoms of anxiety and depression were based on HADS scale sub-scores and divided into four groups (< 8 on both subscales; ≥ 8 on one subscale; ≥ 8 on both subscales). Clinical characteristics were compared between subgroups. Multivariate logistic regression determined associations of clinical characteristics and anxiety and/or depressive symptoms in people with severe asthma. Results: Participants were (mean ± SD) 59.3 ± 14.7 years old, and 62% female. There were 74 (53%) severe asthma participants without symptoms of anxiety/depression, 11 (7%) with symptoms of anxiety, 37 (26%) with symptoms of depression and 18 (13%) with symptoms of anxiety and depression. Quality of life impairment was greater in participants with symptoms of depression (4.4 ± 1.2) and combined symptoms of anxiety and depression (4.4 ± 1.1). Asthma control was worse in those with symptoms of depression (2.9 ± 1.1) and combined anxiety and depression (2.6 ± 1.0). In multivariate models, dysfunctional breathing was associated with symptoms of anxiety (OR = 1.24 [1.01, 1.53]). Dyspnoea was associated with symptoms of depression (OR = 1.90 [1.10, 3.25]). Dysfunctional breathing (OR 1.16 [1.04, 1.23]) and obesity (OR 1.17 [1.00, 1.35]) were associated with combined symptoms of anxiety and depression. Conclusion: People with severe asthma and anxiety and/or depressive symptoms have poorer QoL and asthma control. Dyspnoea, dysfunctional breathing and obesity are associated with these symptoms. These key clinical characteristics should be targeted in severe asthma management. [ABSTRACT FROM AUTHOR]

Background: Irrreversible interstitial lung disease (ILD) is associated with high morbidity and mortality. Palliative care needs of patients and caregivers are not routinely assessed; there is no tool to identify needs and triage support in clinical practice. Objective: The study objective was to adapt and face/content validate a palliative needs assessment tool for people with ILD. Methods: The Needs Assessment Tool: Progressive Disease-Cancer (NAT:PD-C) was adapted to reflect the palliative care needs identified from the ILD literature and patient/caregiver interviews. Face and content validity of the NAT:PD-ILD was tested using patient/caregiver focus groups and an expert consensus group. Participants in the study were two English tertiary health care trusts' outpatients clinics. There were four focus groups: two patient ( n = 7; n = 4); one caregiver ( n = 3); and one clinician ( n = 8). There was a single caregiver interview, and an expert consensus group-academics ( n = 3), clinicians ( n = 9), patients ( n = 4), and caregivers ( n = 2). Each item in the tool was revised as agreed by the groups. Expert consensus was reached. Results: Overall, the tool reflected participants' experience of ILD. Each domain was considered relevant. Adaptations were needed to represent the burden of ILD: respiratory symptoms (especially cough) and concerns about sexual activity were highlighted. All emphasized assessment of caregiver need as critical, and the role of caregivers in clinical consultations. Conclusions: The NAT:PD-ILD appears to have face and content validity. The inclusion of the family caregiver in the consultation as someone with their own needs as well as a source of information was welcomed. Reliability testing and construct validation of the tool are ongoing. [ABSTRACT FROM AUTHOR]

Background: There is growing interest in the collection and use of patient-reported outcome measures (PROMs) to support clinical decision making in patients with non-small cell lung cancer (NSCLC). However, an overview of research into the prognostic value of PROMs is currently lacking.Aim: To explore to what extent, how, and how robustly the value of PROMs for prognostic prediction has been investigated in adults diagnosed with NSCLC.Methods: We systematically searched Medline, Embase, CINAHL Plus and Scopus for English-language articles published from 2011 to 2021 that report prognostic factor study, prognostic model development or validation study. Example data charting forms from the Cochrane Prognosis Methods Group guided our data charting on study characteristics, PROMs as predictors, predicted outcomes, and statistical methods. Two reviewers independently charted the data and critically appraised studies using the QUality In Prognosis Studies (QUIPS) tool for prognostic factor studies, and the risk of bias assessment section of the Prediction model Risk Of Bias ASsessment Tool (PROBAST) for prognostic model studies.Results: Our search yielded 2,769 unique titles of which we included 31 studies, reporting the results of 33 unique analyses and models. Out of the 17 PROMs used for prediction, the EORTC QLQ-C30 was most frequently used (16/33); 12/33 analyses used PROM subdomain scores instead of the overall scores. PROMs data was mostly collected at baseline (24/33) and predominantly used to predict survival (32/33) but seldom other clinical outcomes (1/33). Almost all prognostic factor studies (26/27) had moderate to high risk of bias and all four prognostic model development studies had high risk of bias.Conclusion: There is an emerging body of research into the value of PROMs as a prognostic factor for survival in people with NSCLC but the methodological quality of this research is poor with significant bias. This warrants more robust studies into the prognostic value of PROMs, in particular for predicting outcomes other than survival. This will enable further development of PROM-based prediction models to support clinical decision making in NSCLC. [ABSTRACT FROM AUTHOR]

Introduction: There is limited research exploring how smoking cessation treatment should be implemented into lung cancer screening in the United Kingdom. This study aimed to understand attitudes and preferences regarding the integration of smoking cessation support within lung cancer screening from the perspective of those eligible. Methods: Thirty‐one lung cancer screening eligible individuals aged 55–80 years with current or former smoking histories were recruited using community outreach and social media. Two focus groups (three participants each) and 25 individual telephone interviews were conducted. Data were analysed using the framework approach to thematic analysis. Results: Three themes were generated: (1) bringing lung cancer closer to home, where screening was viewed as providing an opportunity to motivate smoking cessation, depending on perceived personal risk and screening result; (2) a sensitive approach to cessation with the uptake of cessation support considered to be largely dependent on screening practitioners' communication style and expectations of stigma and (3) creating an equitable service that focuses on ease of access as a key determinant of uptake, where integrating cessation within the screening appointment may sustain increased quit motivation and prevent loss to follow‐up. Conclusions: The integration of smoking cessation into lung cancer screening was viewed positively by those eligible to attend. Screening appointments providing personalized lung health information may increase cessation motivation. Services should proactively support participants with possible fatalistic views regarding risk and decreased cessation motivation upon receiving a good screening result. To increase engagement in cessation, services need to be person‐centred. Patient or Public Contribution: This study has included patient and public involvement throughout, including input regarding study design, research materials, recruitment strategies and research summaries. [ABSTRACT FROM AUTHOR]

To determine how decision making interventions for use in advanced cancer treatment consultations function and whether they increase perceptions of shared decision making (SDM) behaviours within consultations. A systematic search of five literature databases was conducted. Evaluations of decision making interventions where participants faced active treatment decisions for stage 4 or otherwise incurable cancer were included. Intervention descriptions were coded using Behaviour Change Techniques (BCTs) to provide a narrative of how the interventions function. A narrative synthesis of interventions effect on perceptions of SDM behaviours compared to usual care was conducted. Four studies presenting different interventions were included. Education, training, modelling and enablement intervention functions were identified. Oncologist SDM training alone and combined with a patient communication aid demonstrated the only significant effect (p < 0.05) on SDM behaviours in advanced cancer consultations. Healthcare professional (HCP) SDM training which includes modelling and enablement functions may be effective in increasing clinician motivation, capability and opportunity to facilitate SDM in advanced cancer consultations. Implementing HCP SDM training into practice may encourage greater uptake of SDM which may lead to treatment decisions concordant with the goals of care of people with advanced cancer. • Few advanced cancer SDM interventions measure whether perceived SDM behaviours occur. • Interventions with HCP training were more successful at facilitating SDM behaviours. • There are significant differences in how SDM behaviours are measured. • Interventions used multiple functions to promote SDM (e.g education and modelling). [ABSTRACT FROM AUTHOR]

Abstract: Objective: To identify and summarise studies of the psychological well-being of informal carers of people with chronic obstructive pulmonary disease. Design: The review included studies if they reported the carers perspective of caregiving – studies that focused mostly on the person with chronic obstructive pulmonary disease were included only if the carers perspective of the caregiver role could be extracted. Data sources: Electronic searches of MEDLINE, CINAHL, PsychInfo, Sociological Abstracts and The Cochrane Library were carried out between December 2008 and February 2009, with update searches undertaken in June 2011. Review methods: A narrative approach was adopted to evaluate studies according to their contribution and drew together evidence from a range of methodologies, including qualitative and quantitative studies. Results: Twenty studies were included in this review. Twelve studies focuses only on the caregiver (quantitative studies=7 and qualitative studies=5) and eight included caregivers and the person with chronic obstructive pulmonary disease (quantitative=6 and qualitative=2). Common methodological limitations of studies included in this review were a lack of non-caregiver age-matched comparison groups, focus on the experience of female carers, small sample sizes, and failure to follow-up caregivers longitudinally. Seven studies provided estimates of the prevalence of psychological distress among caregivers but no conclusions could be drawn from the current evidence base. The totality of the current evidence-base suggests that many factors are related to caregiver psychological distress, but it is not possible to gauge the prevalence of this at present. Conclusion: Further studies are needed to clarify the prevalence of chronic obstructive pulmonary disease caregivers’ psychological comorbidity and disease specific factors that predict poorer carer health outcomes. That work will enable appropriate interventions to be developed and evaluated. [Copyright &y& Elsevier]

Abstract: Objective: To identify and summarise studies of the psychological well-being of informal carers of people with chronic obstructive pulmonary disease. Design: The review included studies if they reported the carers perspective of caregiving – studies that focused mostly on the person with chronic obstructive pulmonary disease were included only if the carers perspective of the caregiver role could be extracted. Data sources: Electronic searches of MEDLINE, CINAHL, PsychInfo, Sociological Abstracts and The Cochrane Library were carried out between December 2008 and February 2009, with update searches undertaken in June 2011. Review methods: A narrative approach was adopted to evaluate studies according to their contribution and drew together evidence from a range of methodologies, including qualitative and quantitative studies. Results: Twenty studies were included in this review. Twelve studies focuses only on the caregiver (quantitative studies=7 and qualitative studies=5) and eight included caregivers and the person with chronic obstructive pulmonary disease (quantitative=6 and qualitative=2). Common methodological limitations of studies included in this review were a lack of non-caregiver age-matched comparison groups, focus on the experience of female carers, small sample sizes, and failure to follow-up caregivers longitudinally. Seven studies provided estimates of the prevalence of psychological distress among caregivers but no conclusions could be drawn from the current evidence base. The totality of the current evidence-base suggests that many factors are related to caregiver psychological distress, but it is not possible to gauge the prevalence of this at present. Conclusion: Further studies are needed to clarify the prevalence of chronic obstructive pulmonary disease caregivers’ psychological comorbidity and disease specific factors that predict poorer carer health outcomes. That work will enable appropriate interventions to be developed and evaluated. [ABSTRACT FROM AUTHOR]

Introduction: Fatigue is a disruptive symptom that inhibits normal functional performance of COPD patients in daily activities. The availability of a short, simple, reliable and valid scale would improve assessment of the characteristics and influence of fatigue in COPD. Methods: At baseline, 2107 COPD patients from the ECLIPSE cohort completed the Functional Assessment of Chronic Illness Therapy Fatigue (FACIT-F) scale. We used well-structured classic method, the principal components analysis (PCA) and Rasch analysis for structurally examining the 13-item FACIT-F. Results: Four items were less able to capture fatigue characteristics in COPD and were deleted. PCA was applied to the remaining 9 items of the modified FACIT-F and resulted in three interpretable dimensions: i) general (5 items); ii) functional ability (2 items); and iii) psychosocial fatigue (2 items). The modified FACIT-F had high internal consistency (Cronbach's α = 0.91) and it did not fit a uni-dimensional Rasch model, confirming the prior output from the PCA. The correlations between total score and each dimension were ≥ 0.64 and within dimensions ≥0.43 (p < 0.001 for all). The original and modified FACIT-F had significant convergent validity; its scores were associated with SGRQ total score (0.69 and 0.7) and mMRC dyspnoea scores (0.48 and 0.47), (p = <0.001 for all). The scale had meaningful discriminating ability in identifying patients with poor exercise performance and more depressive symptoms. Conclusion: The original and modified FACIT-F are valid and reliable scales in COPD. The modified version is shorter and measures not only total fatigue but also its sub-components in COPD. [ABSTRACT FROM AUTHOR]

Introduction: The Dyspnoea‐12 (D‐12) is a brief, easy to complete questionnaire for measuring breathlessness. Objectives: To facilitate further efforts to measure dyspnoea in real clinical settings, the authors aimed to develop and validate a Japanese version of the D‐12 and also compare the D‐12 with the Baseline Dyspnea Index (BDI) and the Activity component of the St. George's Respiratory Questionnaire (SGRQ). Methods: The standardized procedure in accordance with international guidelines was used to create the translation. A validation study with a cross‐sectional observational design was conducted on 122 subjects with stable chronic obstructive pulmonary disease (COPD). Results: The internal consistency of the D‐12 was high (Cronbach's coefficient α = 0.883) and similar to that of the BDI (α = 0.824) and SGRQ Activity (α = 0.872). The relationships between tools were statistically significant (|Rs| = 0.53 to 0.66). Although the scores obtained from all three tools were skewed toward the milder end of the respective scales, this deviation was most prominent in the D‐12 with a floor effect of 48.4%. Conclusion: The Japanese version of the D‐12 was successfully validated, but we should be careful of any floor effect and marked skew to the mild end of the scale, especially in subjects with mild COPD. [ABSTRACT FROM AUTHOR]

The idiopathic pulmonary fibrosis-specific version of the St George's Respiratory Questionnaire (SGRQ-I) is a valid tool to assess health-related quality of life in patients with interstitial lung diseases (ILDs). To translate and cross-culturally adapt the SGRQ-I to Brazilian-Portuguese, and to assess its measurement properties. Phase one consisted of the translation and cross-cultural adaptation of the questionnaire. In phase two, intra- and inter-assessor reliability (intraclass correlation coefficient [ICC]), internal consistency (Cronbach's α), minimal detectable change (MDC), ceiling/floor effects, convergent validity (correlation with SF-36 questionnaire), and discriminative validity (according to clinical characteristics) were investigated. No significant adaptations were needed during the translation process of the SGRQ-I. In phase two, 30 patients with ILD were included (15 men; age 59 ± 10 years; Forced Vital Capacity 73 [61–80]%predicted). The total score on the SGRQ-I presented excellent intra-assessor (ICC: 0.93; 95%CI: 0.85, 0.97]) and inter-assessor (ICC: 0.88; 95%CI: 0.77, 0.94) agreement. Internal consistency was considered adequate for the domains impact, activity, and total score (0.79<α<0.88) but not for symptoms (α=0.43). MDC was 12.8 points and ceiling/floor effects were found in only 3% of patients. No discriminative validity was observed, but there was adequate convergent validity. The results provide preliminary evidence of adequate measurement properties and validity of the Brazilian-Portuguese version of the SGRQ-I for patients with ILDs. [ABSTRACT FROM AUTHOR]

Introduction: Dyspnoea‐12 scale is a validated assessment tool, capturing the perception of dyspnoea and its physical and affective effects in individuals with chronic obstructive pulmonary disease (COPD). A validated version for the Chinese‐speaking population has been unavailable. Objective: To develop a Chinese version of D‐12 (D‐12‐C) scale and evaluate its validity and reliability. Methods: D‐12 was translated from English to traditional Chinese in collaboration with a physician and a linguist. Back translation was adopted to ensure accuracy of the translation. A total of 155 COPD patients were recruited to test the reliability and validity of the D‐12‐C scale. Internal reliability and test‐retest reliability were measured with Cronbach's alpha coefficient and intra‐class correlation coefficient, respectively. Construct validity was assessed through exploratory factor analysis (EFA). Concurrent validity was assessed by the correlation of D‐12‐C total score and sub‐scores and the Chinese version of Saint George's Respiratory Questionnaire (SGRQ), 36‐Item Short Form Health Survey (SF‐36), COPD Assessment Test (CAT) and Hospital Anxiety and Depression Scale (HADS) total score and sub‐scores. Results: The two‐factor structure of D‐12‐C was confirmed by EFA. D‐12‐C and its sub‐scores demonstrated high level of internal reliability (Cronbach's alpha = 0.88) and moderate level of test‐retest reliability. D‐12‐C total score, physical and affective sub‐scores were significantly correlated to SGRQ total score (rs = 0.59, p < 0.001) and activity sub‐score (rs = 0.38, p = 0.006), SF‐36 mental health sub‐score (rs = −0.36, p < 0.001), CAT (rs = 0.56, p < 0.001), HADS anxiety (rs = 0.51, p < 0.001) and depression sub‐scores (rs = 0.44, p < 0.001). Conclusion: D‐12‐C scale was developed, which demonstrated satisfactory reliability and validity in measuring dyspnoea among COPD patients. [ABSTRACT FROM AUTHOR]

Background: It is well recognised that access and receipt of appropriate guideline recommended treatment with systemic anti-cancer therapies for secondary breast cancer is a key determinant in overall survival. Where there is disparity in access this may result in unwarranted variation and disparity in outcomes. Individual, clinical and wider contextual factors have been associated with these disparities, however this remains poorly understood for women with secondary breast cancer. The purpose of the review is to examine individual, clinical and contextual factors which influence access to evidence-based systemic anti-cancer therapies for women with secondary breast cancer. This will include barriers and facilitators for access and receipt of treatment and an exploration of women and clinicians experience and perspectives on access. Methods: A mixed methods approach with a segregated design will be used to examine and explore factors which influence access to systemic anti-cancer therapies for women with secondary breast cancer. Electronic databases to be searched from January 2000 onwards will be EBSCO CINAHL Plus, Ovid MEDLINE, Ovid EMBASE, PsychINFO and the Cochrane Library and JBI database. This will include NHS Evidence which will be searched for unpublished studies and gray literature. Title and abstract citations and full-text articles will be screened by the author and second reviewer. Data will be extracted by the author and validated by the second reviewer. An overarching synthesis will be produced which brings together quantitative and qualitative findings. Methodological quality and risk of bias will be assessed using the Mixed Methods Appraisal Tool. Discussion: Understanding individual, clinical and wider contextual factors associated with access and receipt of systemic anti-cancer therapies for secondary breast cancer is a complex phenomenon. These will be examined to determine any association with access. Review findings will be used to guide future research in this area and the development of an evidence-based service level intervention designed to address unwarranted variation in access based upon the Medical Research Council (MRC) approach to the development, implementation and evaluation of complex interventions. Systematic review registration: The review protocol has been registered in PROSPERO CRD42020196490. [ABSTRACT FROM AUTHOR]

Objective: To examine follow‐up procedures after men are discharged into primary care following prostate cancer and highlight any areas for service improvement. Methods: Patient record data from two Greater Manchester boroughs were retrieved retrospectively to investigate discharge instructions and monitoring adherence. Questionnaires were sent to patients exploring their understanding of the follow‐up process. Results: A total of 300 records were accessed. Prostate‐specific antigen (PSA) re‐referral level was provided to GPs in 39% of cases. Forty‐ six percent of men were not tested frequently enough, and 6% had no PSA testing recorded post‐discharge. A total of 222 patient questionnaires were returned. Sixty‐seven percent felt GPs should be responsible for PSA monitoring, and 60% felt confident that their GP was doing so effectively. Conversely, 12% felt their PSA monitoring had been neglected. Conclusion: The findings highlight the complex nature of the follow‐up and monitoring processes for prostate cancer patients. There is an urgent need for consensus in terms of monitoring frequency and referral pathways. Many patients do not engage in accurate monitoring post‐treatment which has implications for early diagnosis of recurrence. Findings will be used to create an evidence‐based, uniform Greater Manchester PSA monitoring service which is safe, acceptable and effective for all. [ABSTRACT FROM AUTHOR]

The original article can be found online at https://doi.org/10.1186/s13643-023-02337-8.Correction:Syst Rev 12, 183 (2023)https://doi.org/10.1186/s13643-023-02337-8Following publication of the original article [[1]], there was an error in the author name 'Fiona Thistlewaite' which should have been 'Fiona Thistlethwaite'. The original article has been corrected.By Sally Taylor; Kate Law; Jake Coomber‑Moore; Michelle Davies; Fiona Thistlethwaite; Mel Calvert; Olalekan Aiyegbusi and Janelle YorkeReported by Author; Author; Author; Author; Author; Author; Author; Author [Extracted from the article]