A range of memory possibilities: The challenge of the false memory debate for clinicians and researchers

The aim of this article is to present a succinct review and evaluation of the main areas of contention in the false memory debate and, from this basis, to suggest ways in which the best from both sides can be utilised. We examine the potential pitfalls of therapy in terms of the fallibility and suggestibility of autobiographical memory and therapists and therapeutic techniques as the architects of false memories. We then evaluate the case for false memory formation examining if some researchers hold misconceived views of psychotherapy, if experimental studies lack ecological validity, and the effect of trauma on memory. Finally, we explore how the potential pitfalls of therapy can be avoided in practice, reflecting on the usefulness of British Psychological Society guidelines, how clinicians can implement research findings, and how research on the false memory debate can be improved. We conclude that the way forward is researcher-clinician collaboration in the development of ecologically valid research paradigms

EHealth Literacy in UK Teenagers and Young Adults: Exploration of Predictors and Factor Structure of the eHealth Literacy Scale (eHEALS).

BACKGROUND: Increasingly, teenagers and young adults (TYAs) seek out health information online; however, it is not clear whether they possess electronic health (eHealth) literacy, defined as "the ability to select, appraise, and utilize good quality health information from the internet." A number of factors are included in the Lily model proposed by Norman and Skinner underpinning the development of eHealth literacy. It is important to understand which elements may influence the development of eHealth literacy in young people, as the current generation will continue to "Google it" when faced with a health problem throughout their lives. OBJECTIVE: The objectives of this study are to explore potential factors influencing young people's eHealth literacy and explore the underlying constructs of the eHealth Literacy Scale (eHEALS) in a population of UK university students. METHODS: A total of 188 undergraduate psychology students from a large UK University were recruited as an opportunity sample. Of these, 88.8% (167/188) of participants were female with a mean age of 20.13 (SD 2.16) years and the majority were White British (159/188, 84.6%). Employing a cross-sectional design TYAs completed the following measures exploring eHealth literacy (eHEALS): Irrational Health Belief Scale; Newest Vital Sign (NVS), a measure of functional health literacy; Need for Cognition Scale, a preference for effortful cognitive activity; and General Self-Efficacy (GSE) Scale, exploring personal agency and confidence. The eHEALS was also subject to exploratory factor analysis (EFA), for which in addition to the total variance explained, the scree plot, eigenvalues, and factor loadings were assessed to verify the structure. RESULTS: eHEALS and GSE were significantly positively correlated (r=0.28, P<.001) and hierarchical linear modeling revealed GSE as the significant predictor of scores on the eHEALS (F1,186=16.16, P<.001, R2=0.08), accounting for 8.0% of the variance. Other notable relationships were GSE and need for cognition (NFC) were also positively correlated (r=0.33, P<.001), and NFC and irrational health beliefs were significantly negatively correlated (r=-.14, P=.03). Using Spearman correlations, GSE and NVS (rs=0.14, P=.04) and NFC and NVS (rs=0.19, P=.003) were positively correlated. An EFA revealed the scale to be stable and identified a 2-factor structure related to information acquisition and information application. CONCLUSIONS: This is the first study in the UK to explore relationships between these key variables and verify the structure of the eHEALS in a TYA population in the UK. The findings that self-efficacy has a major influence firmly consolidate its status as fundamental to the development of eHealth literacy. Future studies will explore the influence of body image and the development of eHealth literacy in more diverse TYA populations

Exploring the Influence of Social Media Influencers on Intention to Attend Cervical Screening in the UK: Utilising the Theory of Planned Behaviour.

OBJECTIVES: Cervical cancer is 99.8% preventable when detected early; however, uptake of screening in the United Kingdom is at a 20-year low. Recently, a number of social media influencers have video logged about their experiences of cervical screening through narrative communication with their audience. Here we aimed to explore if accessing cervical screening information from a social media influencer can impact the theory of planned behaviour variables and predict intention to attend cervical screening appointments. DESIGN: Utilising a cross-sectional design a volunteer sample of 102 UK women (mean age = 28; SD = 3.10; range = 25-35) took part in an online questionnaire study. RESULTS: Hierarchical regression modelling revealed attitude as a significant predictor of intention to attend a cervical screening appointment and that social media influencers affect attitudes of their audience, indirectly influencing intention to attend. CONCLUSION: Health messages communicated by social media influencers are effective in promoting positive attitudes but not directly influence intention to attend towards cervical screening. Further research should explore influencer impact on attitudes towards this health behaviour with the ultimate aim of increasing attendance and consequently saving lives

Online tool for monitoring adverse events in patients with cancer during treatment (eRAPID): field testing in a clinical setting

Objectives: Electronic patient self-Reporting of Adverse-events: Patient Information and aDvice (eRAPID) is an online system developed to support patient care during cancer treatment by improving the detection and management of treatment-related symptoms. Patients can complete symptom reports from home and receive severity-based self-management advice, including notifications to contact the hospital for severe symptoms. Patient data are available in electronic records for staff to review. Prior to the commencement of a randomised controlled trial (RCT), field testing of the intervention was undertaken to troubleshoot practical issues with intervention integration in clinical practice. Design: Observational clinical field testing. Setting: Medical oncology breast service in a UK cancer centre. Participants: 12 patients receiving chemotherapy for early breast cancer and 10 health professionals (oncologists and specialist nurses). Intervention: Patients were asked to use the eRAPID intervention and complete weekly online symptom reports during four cycles of chemotherapy. Clinical staff were invited to access and use patient data in clinical assessments. Analysis: Descriptive data on the frequency of online symptom report completion and severe symptom notifications were collated. Verbal and written feedback was collected from patients and staff and semistructured interviews were conducted to explore patient experiences. Interviews were transcribed and analysed thematically. Results: The testing ran from January 2014 to March 2014. Feedback from patients and staff was largely positive. Patients described eRAPID as ‘reassuring’ and ‘comforting’ and valued the tailored management advice. Several changes were made to refine eRAPID. In particular, improvement of the clinical notification, patient reminder systems and changes to patient and staff training. Conclusions: The field testing generated valuable results used to guide refinement of eRAPID prior to formal intervention evaluation. Feedback indicated that eRAPID has the potential to improve patients’ self-efficacy, knowledge and confidence with managing symptoms during treatment. A large-scale RCT is underway with data collection due to finish in October 2018

Breaking the silence: A qualitative exploration of parental perspectives of children with Goldenhar syndrome

Background Goldenhar Syndrome is a rare congenital condition, typically characterized by craniofacial abnormalities and vertebral malformations. Due to its rare and complex nature, the etiology is unconfirmed, resulting in parental uncertainty and subsequent emotional sequelae. Clinical manifestations have been researched but few studies have explored parental wellbeing and Quality of Life (QoL). In this qualitative study, we explore parental views of the challenges and lived experience of raising a child with Goldenhar Syndrome. Methods Ten biological parents (five mothers and five fathers), recruited at the Goldenhar UK Conference, took part in audio-recorded, semi-structured interviews. Interviews explored emotional wellbeing, views surrounding causation, support accessed, challenges faced, experience of stigma and future outlooks. Reflexive thematic analysis was employed, and transcripts were subject to deductive and inductive coding. Results Seven themes were identified: support networks (Goldenhar UK), rollercoaster of emotion; gendered coping; uncertainty; societal reactions; coping with challenge and acceptance. Conclusions This is the first-time the life perspectives of parents, raising a child with Goldenhar Syndrome, have been explored via interviews. We have unearthed prominent issues that impact parental QoL including isolation and distress at the point of diagnosis, and throughout the multidisciplinary health journey. We have also established significant indicators of the ongoing QoL challenges faced by young people with Goldenhar Syndrome. Future work is underway exploring these issues further with teenagers, young people and adults with Goldenhar to develop a conceptual framework of their QoL. This will be used to develop a bespoke patient reported outcome (PRO) to give voice to the challenges children and young adults face during their medical journey

Patients' confidence in treatment decisions for early stage non-small cell lung cancer (NSCLC).

BACKGROUND: In early-stage Non-Small Cell Lung Cancer (NSCLC) patients, little is known about how to measure patient participation in Shared-Decision Making (SDM). We examined the psychometric properties and clinical acceptability of the Decision Self-Efficacy scale (DSE) in a cohort of patients undergoing to Stereotactic Ablative Radiotherapy (SABR) or Video-assisted Thoracoscopic Surgery (VATS) to capture patient involvement in treatment decisions. METHODS: In the context of a prospective longitudinal study (Life after Lung Cancer-LiLAC) involving 244 patients with early-stage NSCLC, 158 (64.7%) patients completed the DSE either on paper or electronically online prior to treatment with SABR or VATS pulmonary resection. DSE psychometric properties were examined using: principal components analysis of item properties and internal structure, and internal construct validity; we also performed a sensitivity analysis according to Eastern Cooperative Oncology Group Performance Status (ECOG PS), gender, age and treatment received (VATS or SABR) difference. RESULTS: Exploratory factor analysis using polychoric correlations substantiated that the 11 item DSE is one scale accounting for 81% of the variance. We calculated a value of 0.96 for Cronbach's alpha for the total DSE score. DSE scores did not differ by gender (p = 0.37), between the two treatment groups (p = 0.09) and between younger and older patients (p = 0.4). However, patients with an ECOG PS > 1 have a DSE mean of 73.8 (SD 26) compared to patients with a PS 0-1 who have a DSE mean of 85.8 (SD 20.3 p = 0.002). CONCLUSION: Findings provide preliminary evidence for the reliability and validity of the DSE questionnaire in this population. However, future studies are warranted to identify the most appropriate SDM tool for clinical practice in the lung cancer treatment field

Asking the right questions to get the right answers: Using cognitive interviews to review the acceptability, comprehension and clinical meaningfulness of patient self-report adverse event items in oncology patients

Background: Standardized reporting of treatment-related adverse events (AE) is essential in clinical trials, usually achieved by using the National Cancer Institute (NCI) Common Terminology Criteria for Adverse Events (CTCAE) reported by clinicians. Patient-reported adverse events (PRAE) may add value to clinician assessments, providing patient perspective on subjective toxicity. We developed an online patient symptom report and self-management system for real-time reporting and managing AE during cancer treatment integrated with electronic patient records (eRAPID). As part of this program we developed a patient version of the CTCAE (version 4.0), rephrasing terminology into a self-report format. We explored patient understanding of these items via cognitive interviews. Material and method: Sixty patients (33 female, 27 male) undergoing treatment were purposively sampled by age, gender and tumor group (median age 61.5, range 35–84, 12 breast, 12 gynecological, 13 colorectal, 12 lung and 11 renal). Twenty-one PRAE items were completed on a touch-screen computer. Subsequent audio-recorded cognitive interviews and thematic analysis explored patients’ comprehension of items via verbal probing techniques during three interview rounds (n = 20 patients/round). Results: In total 33 item amendments were made; 29% related to question comprehension, 73% response option and 3% order effects. These amendments to phrasing and language improved patient understanding but maintained CTCAE grading and key medical information. Changes were endorsed by members of a patient advisory group (N = 11). Conclusion: Item adaptations resulted in a bank of consistently interpreted self-report AE items for use in future research program. In-depth analysis of items through cognitive interviews is an important step towards developing an internationally valid system for PRAE, thus improving patient safety and experiences during cancer treatment

The impact of COVID-19 on PRO development, collection and implementation: views of UK and Ireland professionals

Background PROs are valuable tools in clinical care to capture patients’ perspectives of their health, symptoms and quality of life. However the COVID-19 pandemic has had profound impacts on all aspects of life, in particular healthcare and research. This study explores the views of UK and Irish health professionals, third sector and pharmaceutical industry representatives and academic researchers on the impact of COVID-19 on PRO collection, use and development in clinical practice. Methods A volunteer sample took part in a 10 question cross sectional qualitative survey, on the impact of COVID-19, administered online via Qualtrics. Demographic data was descriptively analysed, and the qualitative free text response data was subject to thematic analysis and summarised within the Strengths, Weaknesses, Opportunities and Threats (SWOT) framework. Results Forty nine participants took part located in a range of UK settings and professions. Participants highlighted staff strengths during the pandemic including colleagues’ flexibility and ability to work collaboratively and the adoption of novel communication tools. Weaknesses were a lack of staff capacity to continue or start PRO projects and insufficient digital infrastructure to continue studies online. Opportunities included the added interest in PROs as useful outcomes, the value of electronic PROs for staff and patients particularly in relation to integration into systems and the electronic patient records. However, these opportunities came with an understanding that digital exclusion may be an issue for patient groups. Threats identified included that the majority of PRO research was stopped or delayed and funding streams were cut. Conclusions Although most PRO research was on hold during the pandemic, the consensus from participants was that PROs as meaningful outcomes were valued more than ever. From the opportunities afforded by the pandemic the development of electronic PROs and their integration into electronic patient record systems and clinical practice could be a lasting legacy from the COVID-19 pandemic

eRAPID electronic patient self-Reporting of Adverse-events: Patient Information and aDvice: a pilot study protocol in pelvic radiotherapy.

Background: An estimated 17,000 patients are treated annually in the UK with radical radiotherapy (RT) for pelvic cancer. New treatment approaches in RT have increased survivorship and changed the subjective toxicity profile for patients who experience acute and long-term pelvic-related adverse events (AE). Multi-disciplinary follow-up creates difficulty for monitoring and responding to these events during treatment and beyond. Originally developed for use in systemic oncology therapy eRAPID (electronic patient self-Reporting of Adverse-events: Patient Information and aDvice) is an online system for patients to report AEs from home. eRAPID enables patient data to be integrated into the electronic patient records for use in clinical practice, provides patient management advice for mild and moderate AE and advice to contact the hospital for severe AE. The system has now been developed for pelvic RT patients, and we aim to test the intervention in a pilot study with staff and patients to inform a future randomised controlled trial (RCT). Methods: Eligible patients are those attending St James's University hospital cancer centre and The Christie Hospital Manchester undergoing pelvic radiotherapy+/-chemotherapy/hormonotherapy for prostate, lower gastrointestinal and gynaecological cancers. A prospective 1:1 randomised (intervention or usual care) parallel group design with repeated measures and mixed methods will be employed. We aim to recruit 168 patients following recommendations for sample size estimates for pilot studies. Participants using eRAPID will report AE (at least weekly) from home weekly for 6 weeks and 6 weeks post-treatment (12-week total) then at 18 and 24 weeks. Hospital staff will review eRAPID reports and use information during consultations. Notifications will be sent to the relevant clinical team when severe symptoms are reported. We will measure patient-reported outcomes using validated questionnaires (Functional Assessment in Cancer Therapy Scale-General (FACT-G), European Organisation for Research and Treatment of Cancer Core Quality of Life questionnaire (EORTC-QLQ-C30), process of care impact (hospital records of patient contacts and admissions) and economic variables (EQ5D-5L, patient use of resources)). Staff and patient experiences will be explored via semi-structured interviews. Discussion: The objectives are to establish feasibility, recruitment, integrity of the system and attrition rates, determine effect sizes and aid selection of the primary outcome measure for a future RCT. We will also refine the intervention by exploring staff and patient views. The overall goal of this complex intervention is to improve the safe delivery of cancer treatments, enhance patient care and standardise documentation of AE within the clinical datasets. Trial registration: ClinicalTrials.gov NCT02747264

Patients' views of routine quality of life assessment following a diagnosis of early-stage non-small cell lung cancer.

OBJECTIVES: There is an increasing interest in the quality of life (QoL) evaluation following video-assisted thoracoscopic anatomical lung resection or stereotactic ablative body radiotherapy for early-stage non-small-cell lung cancer (NSCLC). A qualitative interview study was conducted to gain insight into the optimal methods of assessing and discussing QoL in clinical practice. METHODS: A prospective observational longitudinal study of patients with early-stage NSCLC was conducted where repeated QoL measures were administered either online or on paper. A subset of participants was invited for qualitative interviews after the 6-month assessment or at the end of the study. The semi-structured interviews were transcribed verbatim and thematically analysed. RESULTS: Twenty-three patients were interviewed. Generally, patients were content with recruitment and data collection procedures. Most opted to complete the assessments on paper instead of online; this choice was influenced by the level of technology literacy. Some found the questionnaires too generic to reflect their experiences. Barriers to questionnaire completion were mostly practical, and many acknowledged benefits of QoL assessment including allowing them to express problems and health issues, and following changes over time. Generally, participants would like to discuss QoL results during clinical consultations, but reported this rarely happened. CONCLUSIONS: Lung cancer patient interviews confirm the acceptability of repeated QoL assessments, but online data capture is limited. Patients highlight the importance of discussing QoL aspects with their clinical team. Future strategies are needed to optimize the routine collection of patient-reported outcomes in clinical practice