Home-Monitoring Vision Tests to Detect Active Neovascular Age-Related Macular Degeneration.

Importance: Most neovascular age-related macular degeneration (nAMD) treatments involve long-term follow-up of disease activity. Home-monitoring would reduce the burden on patients and their caregivers and release clinic capacity. Objective: To evaluate 3 vision home-monitoring tests for patients to use to detect active nAMD compared with diagnosing active nAMD at hospital follow-up during the after-treatment monitoring phase. Design, Setting, and Participants: This was a diagnostic test accuracy study wherein the reference standard was detection of active nAMD by an ophthalmologist at hospital follow-up. The 3 home-monitoring tests evaluated included the following: (1) the KeepSight Journal (KSJ [International Macular and Retinal Foundation]), which contains paper-based near-vision tests presented as word puzzles, (2) the MyVisionTrack (mVT [Genentech]) vision-monitoring mobile app, viewed on an Apple mobile operating system-based device, and (3) the MultiBit (MBT [Visumetrics]) app, viewed on an Apple mobile operating system-based device. Participants were asked to test weekly; mVT and MBT scores were transmitted automatically, and KSJ scores were returned to the research office every 6 months. Raw scores between hospital follow-ups were summarized as averages. Patients were recruited from 6 UK hospital eye clinics and were 50 years and older with at least 1 eye first treated for active nAMD for at least 6 months or longer to a maximum of 42 months before approach. Participants were stratified by time since starting treatment. Study data were analyzed from May to September 2021. Exposures: The KSJ, mVT, and MBT were compared with the reference standard (in-hospital ophthalmologist examination). Main Outcomes and Measures: Estimated area under receiver operating characteristic curve (AUROC). The study had 90% power to detect a difference of 0.06, or 80% power to detect a difference of 0.05, if the AUROC for 2 tests was 0.75. Results: A total of 297 patients (mean [SD] age, 74.9 [6.6] years; 174 female [58.6%]) were included in the study. At least 1 hospital follow-up was available for 312 study eyes in 259 participants (1549 complete visits). Median (IQR) home-monitoring testing frequency was 3 (1-4) times per month. Estimated AUROC was less than 0.6 for all home-monitoring tests, and only the KSJ summary score was associated with lesion activity (odds ratio, 3.48; 95% CI, 1.09-11.13; P = .04). Conclusions and Relevance: Results suggest that no home-monitoring vision test evaluated provided satisfactory diagnostic accuracy to identify active nAMD diagnosed in hospital eye service follow-up clinics. Implementing any of these evaluated tests, with ophthalmologists only reviewing test positives, would mean most active lesions were missed, risking unnecessary sight loss.

Descriptive study of the challenges when implementing an app for patients with neovascular age-related macular degeneration to monitor their vision at home.

OBJECTIVES: Remote monitoring of health has the potential to reduce the burden to patients of face-to-face appointments and make healthcare more efficient. Apps are available for patients to self-monitor vision at home, for example, to detect reactivation of age-related macular degeneration (AMD). Describing the challenges when implementing apps for self-monitoring of vision at home was an objective of the MONARCH study to evaluate two vision-monitoring apps on an iPod Touch (Multibit and MyVisionTrack). DESIGN: Diagnostic Test Accuracy study. SETTING: Six UK hospitals. METHODS: The study provides an example of the real-world implementation of such apps across health sectors in an older population. Challenges described include the following: (1) frequency and reason for incoming calls made to a helpline and outgoing calls made to participants; (2) frequency and duration of events responsible for the tests being unavailable; and (3) other technical and logistical challenges. RESULTS: Patients (n=297) in the study were familiar with technology; 252/296 (85%) had internet at home and 197/296 (67%) had used a smartphone. Nevertheless, 141 (46%) called the study helpline, more often than anticipated. Of 435 reasons for calling, all but 42 (10%) related to testing with the apps or hardware, which contributed to reduced adherence. The team made at least one call to 133 patients (44%) to investigate why data had not been transmitted. Multibit and MyVisionTrack apps were unavailable for 15 and 30 of 1318 testing days for reasons which were the responsibility of the app providers. Researchers also experienced technical challenges with a multiple device management system. Logistical challenges included regulations for transporting lithium-ion batteries and malfunctioning chargers. CONCLUSIONS: Implementation of similar technologies should incorporate a well-resourced helpline and build in additional training time for participants and troubleshooting time for staff. There should also be robust evidence that chosen technologies are fit for the intended purpose. TRIAL REGISTRATION NUMBER: ISRCTN79058224.

Internet-delivered cognitive behavioral therapy (iCBT) for common mental disorders and subsequent sickness absence: a systematic review and meta-analysis.

AIM: The study aimed to critically review and synthesize the best available evidence about the effectiveness of therapist-guided internet-delivered cognitive behavioral therapy (iCBT) in terms of reducing sickness absence (SA). METHODS: We searched Medline (PubMed), Embase, PsycInfo, CINAHL, and Cochrane Central (up to November 2020) for English language peer-reviewed papers that described randomized controlled trials of therapist-guided iCBT compared with usual treatment for SA in adults with common mental disorders. Eligible studies were assessed with the Cochrane Risk of Bias 1 tool, meta-analysis was conducted using a random-effects model, and standardized mean differences (SMD) with 95% confidence intervals (CI) were reported. A subgroup analysis investigated potential moderating variables (diagnosis, SA at baseline, and estimated accuracy of self-report). RESULTS: We identified 2788 references, of which 68 remained after the completion of the systematic screening process. A hand search of reference lists yielded no additional studies. The full texts of these 68 studies were appraised critically, and 11 were deemed to be suitable for a meta-analysis. SA was similar for iCBT and usual treatment groups (SMD: 0.02, 95% CI, -0.08 to 0.11), and remained similar even after the removal of two studies in which the recall time was over 3 months (SMD: 0.00, -0.11 to 0.12). Similar SA levels in intervention and control groups at 6-month and 12-month follow-up were observed in studies of participants with depression symptoms. CONCLUSIONS: iCBT did not appear to be effective in terms of reducing (largely self-assessed) SA in adults with common mental disorders. There is a need to improve the method and consistency of assessing SA.

Patient Acceptability of Home Monitoring for Neovascular Age-Related Macular Degeneration Reactivation: A Qualitative Study.

Neovascular age-related macular degeneration (nAMD) is a chronic, progressive condition and the commonest cause of visual disability in older adults. This study formed part of a diagnostic test accuracy study to quantify the ability of three index home monitoring (HM) tests (one paper-based and two digital tests) to identify reactivation in nAMD. The aim of this qualitative research was to investigate patients' or participants' views about acceptability and explore adherence to weekly HM. Semi-structured interviews were held with 78/297 participants (26%), with close family members (n = 11) and with healthcare professionals involved in training participants in HM procedures (n = 9) (n = 98 in total). A directed thematic analytical approach was applied to the data using a deductive and inductive coding framework informed by theories of technology acceptance. Five themes emerged related to: 1. The role of HM; 2. Suitability of procedures and instruments; 3. Experience of HM; 4. Feasibility of HM in usual practice; and 5. Impediments to patient acceptability of HM. Various factors influenced acceptability including a patient's understanding about the purpose of monitoring. While initial training and ongoing support were regarded as essential for overcoming unfamiliarity with use of digital technology, patients viewed HM as relatively straightforward and non-burdensome. There is a need for further research about how use of performance feedback, level of support and nature of tailoring might facilitate further the implementation of routinely conducted HM. Home monitoring was acceptable to patients and they recognised its potential to reduce clinic visits during non-active treatment phases. Findings have implications for implementation of digital HM in the care of older people with nAMD and other long-term conditions.

The COVID-19 Pandemic and Ophthalmic Care: A Qualitative Study of Patients with Neovascular Age-Related Macular Degeneration (nAMD).

Concerns have been expressed about the relationship between reduced levels of health care utilisation and the COVID-19 pandemic. This study aimed to elicit and explore the views of patients with neovascular age-related macular degeneration (nAMD) regarding the COVID-19 pandemic and their ophthalmic care. Semi-structured telephone interviews were conducted with thirty-five patients with nAMD taking part in a larger diagnostic accuracy study of home-monitoring tests. Participants were recruited using maximum variation sampling to capture a range of key characteristics including age, gender and time since initial treatment. Transcribed interview data were analysed using a deductive and inductive thematic approach. Three themes emerged from the analysis: i. access to eye clinic care. ii. COVID-19-mitigating factors and care delivery and iii. social and personal circumstances. Participants reported anxieties about cancelled or delayed appointments, limited communication from clinic-based services about appointments, and the impact of this on their ongoing care. Despite these concerns, there was apprehension about attending appointments due to infection risk and a perception that nAMD patients are a 'high risk' group. Views of those who attended clinics during the study period were, however, positive, with social distancing and infection control measures providing reassurance. These findings contribute to our understanding about experiences of patients with nAMD during the COVID-19 pandemic and may have potential implications for future planning of care services in similar circumstances. Innovative approaches may be required to address issues related to access to care, including concerns about delayed or cancelled appointments.

Acceptability of Computerized Cognitive Behavioral Therapy for Adults: Umbrella Review.

BACKGROUND: Mental ill-health presents a major public health problem. A potential part solution that is receiving increasing attention is computer-delivered psychological therapy, particularly during the COVID-19 pandemic as health care systems moved to remote service delivery. However, computerized cognitive behavioral therapy (cCBT) requires active engagement by service users, and low adherence may minimize treatment effectiveness. Therefore, it is important to investigate the acceptability of cCBT to understand implementation issues and maximize potential benefits. OBJECTIVE: This study aimed to produce a critical appraisal of published reviews about the acceptability of cCBT for adults. METHODS: An umbrella review informed by the Joanna Briggs Institute (JBI) methodology identified systematic reviews about the acceptability of cCBT for common adult mental disorders. Acceptability was operationalized in terms of uptake of, dropping out from, or completion of cCBT treatment; factors that facilitated or impeded adherence; and reports about user, carer, and health care professional experience and satisfaction with cCBT. Databases were searched using search terms informed by relevant published research. Review selection and quality appraisal were guided by the JBI methodology and the AMSTAR tool and undertaken independently by 2 reviewers. RESULTS: The systematic searches of databases identified 234 titles, and 9 reviews (covering 151 unique studies) met the criteria. Most studies were comprised of service users with depression, anxiety, or specifically, panic disorder or phobia. Operationalization of acceptability varied across reviews, thereby making it difficult to synthesize results. There was a similar number of guided and unguided cCBT programs; 34% of guided and 36% of unguided users dropped out; and guidance included email, telephone, face-to-face, and discussion forum support. Guided cCBT was completed in full by 8%-74% of the participants, while 94% completed one module and 67%-84% completed some modules. Unguided cCBT was completed in full by 16%-66% of participants, while 95% completed one module and 54%-93% completed some modules. Guided cCBT appeared to be associated with adherence (sustained via telephone). A preference for face-to-face CBT compared to cCBT (particularly for users who reported feeling isolated), internet or computerized delivery problems, negative perceptions about cCBT, low motivation, too busy or not having enough time, and personal circumstances were stated as reasons for dropping out. Yet, some users favored the anonymous nature of cCBT, and the capacity to undertake cCBT in one's own time was deemed beneficial but also led to avoidance of cCBT. There was inconclusive evidence for an association between sociodemographic variables, mental health status, and cCBT adherence or dropping out. Users tended to be satisfied with cCBT, reported improvements in mental health, and recommended cCBT. Overall, the results indicated that service users' preferences were important considerations regarding the use of cCBT. CONCLUSIONS: The review indicated that "one size did not fit all" regarding the acceptability of cCBT and that individual tailoring of cCBT is required in order to increase population reach, uptake, and adherence and therefore, deliver treatment benefits and improve mental health.

Factors influencing physical activity participation among people living with or beyond cancer: a systematic scoping review.

BACKGROUND: It has been posited that physical activity (PA) has the potential to improve health outcomes and the health-related quality of life of people living with or beyond cancer. Despite the well-documented health benefits of PA, there is a low level of PA among cancer patients. A systematic scoping review was conducted to investigate attitudes, perceptions, preferences and barriers vs. facilitators to cancer patients' PA participation. METHODS: A systematic search was performed across four automated databases (PubMed, Embase, PsycINFO and Medline) in keeping with the PRISMA guideline. All cancer types were included, and any age/gender groups were eligible. Both qualitative and quantitative studies were included. The Health Belief Model provided a conceptual framework for the conduct of the scoping review as well as guiding thinking to inform evidence-based interventions. RESULTS: Ninety-eight articles were included in this review. Nearly half of the studies focused on mixed cancer sites; breast cancer was the most commonly examined cancer type (19%). Post-treatment was the most commonly investigated stage (33%), followed by studies of mixed stages of the cancer trajectory (27%), the acute treatment stage (23%) and pre-treatment stage (1%). Patient treatment stage was not reported in 16% of studies. Cancer patients reported positive attitudes to PA and recognized its benefits for health and wellbeing. Cancer-related side effects (e.g. fatigue) were a leading physiological barrier to PA participation, whereas effective symptom management techniques/tools acted as a powerful facilitator. Psychosocial barriers included low motivation and kinesiophobia, and perceived health benefits and social support/guidance by healthcare providers were significant facilitators. Inaccessible fitness facilities hindered cancer patients' PA engagement though the availability of tailored amenities appeared to be a strong facilitator. PA preferences varied in terms of type, place, time, company and source of information and pointed to the need for individualized PA programs. CONCLUSIONS: There is a need for further research to identify barriers and facilitators to PA that are faced by patients with particular cancer types. Recommended PA promoting-strategies involve including exercise science professionals in healthcare teams and ensuring that fitness facilities are accessible.

Patient's perspectives of living with a precancerous condition: Monoclonal gammopathy of undetermined significance (MGUS).

PURPOSE: The aim of this study was to investigate patient experiences of living with monoclonal gammopathy of undetermined significance (MGUS). Living with a premalignant condition such as MGUS may elicit negative psychosocial effects including increased anxiety and fear of progression to cancer. To date, no study utilising qualitative methodology has explored the lived experiences of MGUS patients. METHODS: Data was collected via two focus groups and six telephone interviews. MGUS patients (n=14) were recruited via nurse-led haematology telephone-clinics in Northern Ireland. Interviews were transcribed verbatim and the data subjected to thematic analysis. OUTCOME: Thematic analysis identified 3 overarching themes; (1) The psychosocial impact of an MGUS diagnosis, (2) Knowledge of MGUS and (3) Experiences of MGUS health services. Patients with MGUS reported experiencing poor psychological adjustment to their condition particularly at the point of diagnosis and approaching follow-up appointments. Feelings of isolation, poor information-provision, increased uncertainty and limited psychosocial support for MGUS patients were also reported. Patients did however reflect positively on their experience of being followed up via nurse-led telephone clinics. CONCLUSIONS: Provision of patient friendly information guides at diagnosis, and additional psychosocial support services such as nurse-led telephone clinics and coordinated patient groups may help MGUS patients adjust better to their diagnosis and in doing so improve quality of life in this patient population.

Monitoring for neovascular age-related macular degeneration (AMD) reactivation at home: the MONARCH study.

AIMS: This study aims to quantify the diagnostic test-accuracy of three visual function self-monitoring tests for detection of active disease in patients with neovascular age-related macular degeneration (nAMD) when compared with usual care. An integrated qualitative study will investigate the acceptability of these home-based testing strategies. METHODS: All consenting participants are provided with an equipment pack containing an iPod touch with two vision test applications installed and a paper journal of reading tests. Participants self-monitor their vision at home each week with all three tests for 12-18 months. Usual care continues over this period. Key eligibility criteria are: age ≥50 years; at least one eye with AMD with ≥6-≤42 months since first AMD treatment; and vision not worse than Snellen 6/60, LogMAR 1.04 or 33 letters. The primary outcome, and reference standard, is diagnosis of active disease during usual care monitoring in the Hospital Eye Service. Secondary outcomes include duration of study participation, ability of participants to do the tests, adherence to weekly testing and acceptability of the tests to participants. CONCLUSIONS: Recruitment is in progress at five NHS centres. Challenges in procuring equipment, setting up the devices and transporting devices containing lithium batteries to participating sites delayed the start of recruitment. The study will describe the performance of the tests self-administered at home in detecting active disease compared to usual care monitoring. It will also describe the feasibility of the NHS implementing patient-administered electronic tests or similar applications at home for monitoring health.

Psychosocial support interventions for cancer caregivers: reducing caregiver burden.

PURPOSE OF REVIEW: Informal caregivers of individuals affected by cancer undertake a range of activities and responsibilities throughout the course of the cancer care trajectory. This role is often undertaken alongside employment and other caring roles and can contribute to caregiver burden, which may be ameliorated through psychosocial intervention. RECENT FINDINGS: Fifteen new studies investigating the potential of psychosocial interventions for reducing caregiver burden were identified from the period January 2019 to February 2020. Studies were mostly quasi-experimental or randomised controlled trials (RCTs). Psychoeducation was the main intervention identified, though content varied, psychoeducation was associated with improvements in burden, quality of life (QoL) domains and psychological symptoms for caregivers. A small number of counselling/therapeutic interventions suggest that caregivers supporting patients with advanced cancer or cancers with high symptom burden may experience reduced psychological symptoms and QoL benefits. There was a paucity of evidence for other psychosocial interventions (e.g. mindfulness, acceptance and commitment therapy) and methodological quality was variable across all intervention types. SUMMARY: Psychosocial interventions may help to reduce burden for informal caregivers of individuals affected by cancer, though there remains a need for rigorously designed, multicentred RCTs and to examine the long-term impact of psychosocial interventions for caregivers.

Psychosocial interventions for informal caregivers of people living with cancer.

BACKGROUND: Increasingly, cancer is recognised as a chronic condition with a growing population of informal caregivers providing care for cancer patients. Informal caregiving can negatively affect the health and well-being of caregivers. We need a synthesised account of best evidence to aid decision-making about effective ways to support caregivers for individuals 'living with cancer'. OBJECTIVES: To assess the effectiveness of psychosocial interventions designed to improve the quality of life (QoL), physical health and well-being of informal caregivers of people living with cancer compared with usual care. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, PsycINFO, ProQuest, Open SIGLE, Web of Science from inception up to January 2018, trial registries and citation lists of included studies. SELECTION CRITERIA: We included randomised and quasi-randomised controlled trials comparing psychosocial interventions delivered to adult informal caregivers of adults affected by cancer on a group or individual basis with usual care. Psychosocial interventions included non-pharmacological interventions that involved an interpersonal relationship between caregivers and healthcare professionals. We included interventions delivered also to caregiver-patient dyads. Interventions delivered to caregivers of individuals receiving palliative or inpatient care were excluded. Our primary outcome was caregiver QoL. Secondary outcomes included patient QoL, caregiver and patient depression, anxiety, psychological distress, physical health status and intervention satisfaction and adverse effects. DATA COLLECTION AND ANALYSIS: Pairs of review authors independently screened studies for eligibility, extracted data and conducted 'Risk of bias' assessments. We synthesised findings using meta-analysis, where possible, and reported remaining results in a narrative synthesis. MAIN RESULTS: Nineteen trials (n = 3, 725) were included in the review. All trials were reported in English and were undertaken in high-income countries. Trials targeted caregivers of patients affected by a number of cancers spanning newly diagnosed patients, patients awaiting treatment, patients who were being treated currently and individuals post-treatment. Most trials delivered interventions to caregiver-patient dyads (predominantly spousal dyads) and there was variation in intervention delivery to groups or individual participants. There was much heterogeneity across interventions though the majority were defined as psycho-educational. All trials were rated as being at 'high risk of bias'.Compared to usual care, psychosocial interventions may improve slightly caregiver QoL immediately post intervention (standardised mean difference (SMD) 0.29, 95% confidence interval (CI) 0.04 to 0.53; studies = 2, 265 participants) and may have little to no effect on caregiver QoL at 12 months (SMD 0.14, 95% CI - 0.11 to 0.40; studies = 2, 239 participants) post-intervention (both low-quality evidence).Psychosocial interventions probably have little to no effect on caregiver depression immediately to one-month post-intervention (SMD 0.01, 95% CI -0.14 to 0.15; studies = 9, 702 participants) (moderate-quality evidence). Psychosocial interventions may have little to no effect on caregiver anxiety immediately post-intervention (SMD -0.12, 95 % CI -0.33 to 0.10; studies = 5, 329 participants), depression three-to-six months (SMD 0.03, 95% CI -0.33 to 0.38; studies = 5. 379 participants) post-intervention and patient QoL six to 12 months (SMD -0.05, 95% CI -0.37 to 0.26; studies = 3, 294 participants) post-intervention (all low-quality evidence). There was uncertainty whether psychosocial interventions improve patient QoL immediately (SMD -0.03, 95 %CI -0.50 to 0.44; studies = 2, 292 participants) or caregiver anxiety three-to-six months (SMD-0.25, 95% CI -0.64 to 0.13; studies = 4, 272 participants) post-intervention (both very low-quality evidence). Two studies which could not be pooled in a meta-analysis for caregiver physical health status found little to no effect immediately post-intervention and a small intervention effect 12 months post-intervention. Caregiver or patient satisfaction or cost-effectiveness of interventions were not assessed in any studies. Interventions demonstrated good feasibility and acceptability.Psychosocial interventions probably have little to no effect on patient physical health status immediately post-intervention (SMD 0.17, 95 % CI -0.07 to 0.41; studies = 4, 461 participants) and patient depression three to six months post-intervention (SMD-0.11, 95% CI -0.33 to 0.12; studies = 6, 534 participants) (both moderate-quality evidence).Psychosocial interventions may have little to no effect on caregiver psychological distress immediately to one-month (SMD -0.08, 95% CI -0.42 to 0.26; studies = 3, 134 participants), and seven to 12 months (SMD 0.08, 95% CI -0.42 to 0.58; studies = 2, 62 participants) post-intervention; patient depression immediately (SMD -0.12, 95% CI -0.31 to 0.07; studies = 9, 852 participants); anxiety immediately (SMD -0.13, 95% CI -0.41 to 0.15;studies = 4, 422 participants), and three to six months (SMD -0.22, 95% CI -0.45 to 0.02; studies = 4, 370 participants); psychological distress immediately (SMD -0.02, 95% CI -0.47 to 0.44; studies = 2, 74 participants) and seven to 12 months (SMD -0.27, 95% CI -0.78 to 0.24; studies = 2, 61 participants); and physical health status six to 12 months (SMD 0.06, 95% CI -0.18 to 0.30; studies = 2, 275 participants) post-intervention (all low-quality evidence).Three trials reported adverse effects associated with the interventions, compared with usual care, including higher distress, sexual function-related distress and lower relationship satisfaction levels for caregivers, higher distress levels for patients, and that some content was perceived as insensitive to some participants.Trials not able to be pooled in a meta-analysis did not tend to report effect size and it was difficult to discern intervention effectiveness. Variable intervention effects were reported for patient and caregiver outcomes. AUTHORS' CONCLUSIONS: Heterogeneity across studies makes it difficult to draw firm conclusions regarding the effectiveness of psychosocial interventions for this population. There is an immediate need for rigorous trials with process evaluations and clearer, detailed intervention descriptions. Cost-effectiveness studies should be conducted alongside future trials.

Effectiveness of Mass and Small Media Campaigns to Improve Cancer Awareness and Screening Rates in Asia: A Systematic Review.

PURPOSE: The main objective of this systematic review was to identify whether mass and small media interventions improve knowledge and attitudes about cancer, cancer screening rates, and early detection of cancer in Asia. METHODS: The review was conducted according to a predefined protocol. Medline, EMBASE, CINAHL, Web of Science, Cochrane Library, and Google Scholar were searched in September 2017, and data extraction and rating of methodologic study quality (according to Joanna Briggs Institute rating procedures) were performed independently by reviewers. RESULTS: Twenty-two studies (reported across 24 papers) met the inclusion criteria. Most studies (n = 21) were conducted in high or upper-middle income countries; targeted breast (n = 11), cervical (n = 7), colorectal (n = 3), or oral (n = 2) cancer; and used small media either alone (n = 15) or in combination with mass media and other components (n = 5). Studies regarding cancer screening uptake were of medium to high quality and mainly reported positive outcomes for cervical cancer and mixed results for breast and colorectal cancer. The methodologic strength of research that investigated change in cancer-related knowledge and the cost effectiveness of interventions, respectively, were weak and inconclusive. CONCLUSION: Evidence indicated that small media campaigns seemed to be effective in terms of increasing screening uptake in Asia, in particular cervical cancer screening. Because of the limited number of studies in Asia, it was not possible to be certain about the effectiveness of mass media in improving screening uptake and the effectiveness of campaigns in improving cancer-related knowledge.

Vaccination against pertussis and influenza in pregnancy: a qualitative study of barriers and facilitators.

OBJECTIVES: Influenza and pertussis vaccination programmes have been in place for pregnant women in the UK since 2009 and 2012, respectively. In 2015, vaccine uptake rates were 55% for influenza and 63% for pertussis in Northern Ireland. We conducted a qualitative study with the aim of learning about the views of pregnant women and identifying potential barriers to vaccination in pregnancy. STUDY DESIGN: Qualitative study using focus groups and in-depth interviews. METHODS: We conducted focus group discussions and interviews on vaccination in pregnancy using a discussion guide developed in consultation with stakeholders and service users. Pregnant women were recruited on-street. We performed inductive coding of transcripts and thematic analysis, using a phenomenological approach. RESULTS: Sixteen pregnant women participated. We identified six key themes. Information and knowledge: Vaccinated and unvaccinated women demonstrated similar levels of knowledge and desire for information, preferring direct communication with healthcare professionals. The influence of others: Some vaccinated participants reported firm endorsements of vaccination by healthcare professionals including midwives, while some unvaccinated women recalled neutral or reticent staff. Acceptance and trust: Most women expressed trust of health professionals. Fear and distrust: Vaccinated individuals expressed concerns about side-effects more than unvaccinated women. A few unvaccinated women expressed distrust of vaccines and healthcare systems. Responsibility for the baby: Both groups prioritised protecting the baby but unvaccinated participants were concerned about vaccine-related harm. Accessing vaccination: Multiple appointments, lack of childcare, time off work and having responsibility to organise vaccination hindered some participants from getting immunised. Some women were willing to be vaccinated but did not recall being offered vaccination or were not sufficiently motivated to make arrangements themselves. CONCLUSION: Healthcare professionals appear to have a vital influential role in pregnant women's decisions about vaccination. Involving midwives and improving convenience of vaccination access may increase uptake. Strategies to develop interventions should address the aforementioned barriers to meet the pregnant women's needs.

Evaluation of the psychometric properties of self-reported measures of alcohol consumption: a COSMIN systematic review.

PURPOSE: To review studies about the reliability and validity of self-reported alcohol consumption measures among adults, an area which needs updating to reflect current research. METHODS: Databases (PUBMED (1966-present), MEDLINE (1946-present), EMBASE (1947-present), Cumulative Index of Nursing and Allied Health Literature (CINAHL) (1937-present), PsycINFO (1887-present) and Social Science Citation Index (1976-present)) were searched systematically for studies from inception to 11th August 2017. Pairs of independent reviewers screened study titles, abstracts and full texts with high agreement and a third author resolved disagreements. A comprehensive quality assessment was conducted of the reported psychometric properties of measures of alcohol consumption using the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) to derive ratings of poor, fair, good or excellent for each checklist item relating to each psychometric property. RESULTS: Twenty-eight studies met inclusion criteria and, collectively, they investigated twenty-one short-term recall measures, fourteen quantity-frequency measures and eleven graduated-frequency measures. All measures demonstrated adequate/good test-retest reliability and convergent validity. Quantity-frequency measures demonstrated adequate/good criterion validity; graduated-frequency and short-term recall measures demonstrated adequate/good divergent validity. Quantity-frequency measures and short-term recall measures demonstrated adequate/good hypothesis validity; short-term recall measures demonstrated adequate construct validity. Methodological quality varied within and between studies. CONCLUSIONS: It was difficult to discern conclusively which measure was the most reliable and valid given that no study assessed all psychometric properties and the included studies varied in the psychometric properties that they selected to assess. However, when the results from the range of studies were considered and summed, they tended to indicate that the quantity-frequency measure compared to the other two measures performed best in psychometric terms and, therefore, it is likely to produce the most reliable and valid assessment of alcohol consumption in population surveys.

Cancer-related health behaviours of young people not in education, employment or training ('NEET'): a cross-sectional study.

BACKGROUND: Links between participating in unhealthy behaviours, e.g. smoking, and an increased risk of developing some cancers are well established. Unemployed adults are more likely to participate in cancer-related health behaviours than their employed counterparts. However, evidence of whether this is true in young adults not in education, employment or training (NEET) compared to their 'non-NEET' peers is either limited or inconclusive. Using cross-sectional health data from across the UK, this study aims to investigate whether participation in cancer-related health behaviours varies by NEET status. METHODS: Data for 16-24 year olds were extracted from the 2010-12 Health Surveys for England (HSE) and Scottish Health Surveys (SHeS). Information on economic activity in the last week was used to determine NEET status. Data on whether respondents had been seeking employment within the last four weeks and availability to start within the next two weeks allowed NEETs to be further identified as unemployed (UE) or economically inactive (EI). Logistic regression modelled the effect of being NEET on odds of being a current smoker; heavy drinker; not participating in sport; having eaten less than five portions of fruit or vegetables the day before survey interview and having an unhealthy body mass index (BMI). Analyses were performed before and after exclusion of EI NEETs. RESULTS: Data were extracted for 4272 individuals, of which 715 (17%) were defined as NEET with 371 (52%) and 342 (48%) further classified as UE and EI respectively. Two NEETs could not be further defined as UE or EI due to missing information. Relative to non-NEETs, NEETs were significantly more likely to be current smokers, not participate in sport and have an 'unhealthy' BMI. These results held after adjustment for socio-demographic characteristics both before and after exclusion of EI NEETs. Before exclusion of EI NEETs, NEETs were significantly less likely to be heavy drinkers than non-NEETs. There was no significant difference in likelihood of heavy drinking between NEETs and non-NEETs when excluding EI NEETs. CONCLUSIONS: NEETs were generally at an increased risk of participating in cancer-related health behaviours than non-NEETs. As the likelihood of becoming NEET is greater in socioeconomically-disadvantaged groups, interventions to discourage unhealthy behaviours in NEETs may contribute to a reduction in health inequalities.

Non-pharmacological interventions for cognitive impairment due to systemic cancer treatment.

BACKGROUND: It is estimated that up to 75% of cancer survivors may experience cognitive impairment as a result of cancer treatment and given the increasing size of the cancer survivor population, the number of affected people is set to rise considerably in coming years. There is a need, therefore, to identify effective, non-pharmacological interventions for maintaining cognitive function or ameliorating cognitive impairment among people with a previous cancer diagnosis. OBJECTIVES: To evaluate the cognitive effects, non-cognitive effects, duration and safety of non-pharmacological interventions among cancer patients targeted at maintaining cognitive function or ameliorating cognitive impairment as a result of cancer or receipt of systemic cancer treatment (i.e. chemotherapy or hormonal therapies in isolation or combination with other treatments). SEARCH METHODS: We searched the Cochrane Centre Register of Controlled Trials (CENTRAL), MEDLINE, Embase, PUBMED, Cumulative Index of Nursing and Allied Health Literature (CINAHL) and PsycINFO databases. We also searched registries of ongoing trials and grey literature including theses, dissertations and conference proceedings. Searches were conducted for articles published from 1980 to 29 September 2015. SELECTION CRITERIA: Randomised controlled trials (RCTs) of non-pharmacological interventions to improve cognitive impairment or to maintain cognitive functioning among survivors of adult-onset cancers who have completed systemic cancer therapy (in isolation or combination with other treatments) were eligible. Studies among individuals continuing to receive hormonal therapy were included. We excluded interventions targeted at cancer survivors with central nervous system (CNS) tumours or metastases, non-melanoma skin cancer or those who had received cranial radiation or, were from nursing or care home settings. Language restrictions were not applied. DATA COLLECTION AND ANALYSIS: Author pairs independently screened, selected, extracted data and rated the risk of bias of studies. We were unable to conduct planned meta-analyses due to heterogeneity in the type of interventions and outcomes, with the exception of compensatory strategy training interventions for which we pooled data for mental and physical well-being outcomes. We report a narrative synthesis of intervention effectiveness for other outcomes. MAIN RESULTS: Five RCTs describing six interventions (comprising a total of 235 participants) met the eligibility criteria for the review. Two trials of computer-assisted cognitive training interventions (n = 100), two of compensatory strategy training interventions (n = 95), one of meditation (n = 47) and one of physical activity intervention (n = 19) were identified. Each study focused on breast cancer survivors. All five studies were rated as having a high risk of bias. Data for our primary outcome of interest, cognitive function were not amenable to being pooled statistically. Cognitive training demonstrated beneficial effects on objectively assessed cognitive function (including processing speed, executive functions, cognitive flexibility, language, delayed- and immediate- memory), subjectively reported cognitive function and mental well-being. Compensatory strategy training demonstrated improvements on objectively assessed delayed-, immediate- and verbal-memory, self-reported cognitive function and spiritual quality of life (QoL). The meta-analyses of two RCTs (95 participants) did not show a beneficial effect from compensatory strategy training on physical well-being immediately (standardised mean difference (SMD) 0.12, 95% confidence interval (CI) -0.59 to 0.83; I(2)= 67%) or two months post-intervention (SMD - 0.21, 95% CI -0.89 to 0.47; I(2) = 63%) or on mental well-being two months post-intervention (SMD -0.38, 95% CI -1.10 to 0.34; I(2) = 67%). Lower mental well-being immediately post-intervention appeared to be observed in patients who received compensatory strategy training compared to wait-list controls (SMD -0.57, 95% CI -0.98 to -0.16; I(2) = 0%). We assessed the assembled studies using GRADE for physical and mental health outcomes and this evidence was rated to be low quality and, therefore findings should be interpreted with caution. Evidence for physical activity and meditation interventions on cognitive outcomes is unclear. AUTHORS' CONCLUSIONS: Overall, the, albeit low-quality evidence may be interpreted to suggest that non-pharmacological interventions may have the potential to reduce the risk of, or ameliorate, cognitive impairment following systemic cancer treatment. Larger, multi-site studies including an appropriate, active attentional control group, as well as consideration of functional outcomes (e.g. activities of daily living) are required in order to come to firmer conclusions about the benefits or otherwise of this intervention approach. There is also a need to conduct research into cognitive impairment among cancer patient groups other than women with breast cancer.

Late effects of cancer and cancer treatment--the perspective of the patient.

PURPOSE: Understanding the experience of late effects from the perspective of cancer survivors is essential to inform patient-centred care. This study investigated the nature and onset of late effects experienced by survivors and the manner in which late effects have affected their lives. METHODS: Sixteen purposively selected cancer survivors participated in a qualitative interview study. The data were analysed inductively using a narrative schema in order to derive the main themes that characterised patients' accounts of late effects. RESULTS: Individual survivors tended to experience more than one late effect spanning a range of physical and psychological effects. Late effects impacted on relationships, working life, finances and the ability to undertake daily activities. Survivors reported experiencing psychological late effects from around the end of treatment whereas the onset of physical effects occurred later during the post-treatment period. Late effects were managed using formal health services, informal social support and use of 'wellbeing strategies'. Survivors engaged in a process of searching for reasons for experiencing late effects and struggled to make sense of their situation. In particular, a process of 'peer-patient comparison' was used by survivors to help them make sense of, or cope with, their late effects. There appeared to be an association between personal disposition and adaptation and adjustment to the impact of late effects. CONCLUSIONS: Cancer survivors identified potential components for supported self-management or intervention programmes, as well as important considerations in terms of peer comparisons, personal disposition and making sense of experienced late effects.

Reasons for non-participation in the Northern Ireland Bowel Cancer Screening Programme: a qualitative study.

OBJECTIVES: To identify the reasons why some people do not participate in bowel cancer screening so that steps can be taken to improve informed decision-making. DESIGN: Qualitative study, using focus groups with thematic analysis of data to identify, analyse and report patterns. Transcripts were repeatedly read and inductively coded using a phenomenological perspective, and organised into key themes. SETTING: Belfast and Armagh, two areas of Northern Ireland with relatively low uptake of bowel cancer screening. PARTICIPANTS: Ten women and 18 men in three single-gender focus groups (two male and one female), each with 9-10 participants. Study participants were recruited by convenience sampling from the general public and were eligible for, but had not taken part in, the Northern Ireland Bowel Cancer Screening Programme. RESULTS: Key themes identified were fear of cancer; the test procedure; social norms; past experience of cancer and screening; lack of knowledge or understanding about bowel cancer screening; and resulting behaviour towards the test. Fear about receiving bad news and reluctance to conduct the test themselves were reactions that participants seemed willing to overcome after taking part in open discussion about the test. CONCLUSIONS: We identified barriers to participation in bowel cancer screening and used these insights to develop new materials to support delivery of the programme. Some of the issues raised have been identified in other UK settings, suggesting that knowledge about barriers, and strategies to improve uptake, may be generalisable.

A methodological review of the Short Form Health Survey 36 (SF-36) and its derivatives among breast cancer survivors.

PURPOSE: A systematic review of the validity, reliability and sensitivity of the Short Form (SF) health survey measures among breast cancer survivors. METHODS: We searched a number of databases for peer-reviewed papers. The methodological quality of the papers was assessed using the COnsenus-based Standards for the selection of health Measurement INstruments (COSMIN). RESULTS: The review identified seven papers that assessed the psychometric properties of the SF-36 (n = 5), partial SF-36 (n = 1) and SF-12 (n = 1) among breast cancer survivors. Internal consistency scores for the SF measures ranged from acceptable to good across a range of language and ethnic sub-groups. The SF-36 demonstrated good convergent validity with respective subscales of the Functional Assessment of Cancer Treatment-General scale and two lymphedema-specific measures. Divergent validity between the SF-36 and Lymph-ICF was modest. The SF-36 demonstrated good factor structure in the total breast cancer survivor study samples. However, the factor structure appeared to differ between specific language and ethnic sub-groups. The SF-36 discriminated between survivors who reported or did not report symptoms on the Breast Cancer Prevention Trial Symptom Checklist and SF-36 physical sub-scales, but not mental sub-scales, discriminated between survivors with or without lymphedema. Methodological quality scores varied between and within papers. CONCLUSION: Short Form measures appear to provide a reliable and valid indication of general health status among breast cancer survivors though the limited data suggests that particular caution is required when interpreting scores provided by non-English language groups. Further research is required to test the sensitivity or responsiveness of the measure.

The late effects of cancer and cancer treatment: a rapid review.

This paper aims to synthesize literature about the definition, prevalence, onset and treatments associated with late effects. A rapid review was conducted using Google Scholar to identify reviews related to the late effects of adult-onset cancers. Papers were included if they provided a definition of late effects and/or presented a review of late effects as a result of adult-onset cancers in patients aged 18 years or older. Reviews related to nonmelanoma skin cancer were excluded. Reviews focusing on late effects in survivors of childhood-onset cancers (younger than 18 years) were ineligible for inclusion in the review. A total of 16 reviews were identified. Between 0% and 100% of survivors experienced a range of physical, psychological and social late effects. The onset of physical late effects was defined broadly as 'months or years' after treatment, whereas psychological late effects were defined as occurring at the end of treatment or similarly to physical late effects as 'months or years' after treatment. Few reviews provided an operational definition of late effects, and the onset of late effects was not often reported. Thus, reviews may have included the acute and long-term effects of cancer treatment. Evidence regarding causes, prevalence, and onset was incomplete for many late effects. Understanding the cause and onset of late effects is important in order to provide timely interventions to reduce the risk of late effect development in cancer patients.