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.

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.

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.

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.

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.

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.

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.

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.

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

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 Neovascular age-related macular degeneration (nAMD). The aim of the study was to investigate views about acceptability and explore adherence to weekly HM. Semi-structured interviews were held with 98 patients, family members, and healthcare professionals. A thematic approach was used which was informed by theories of technology acceptance. Various factors influenced acceptability including a patient's understanding about the purpose of monitoring. Training and ongoing support were regarded as essential for overcoming unfamiliarity with digital technology. Findings have implications for implementation of digital HM in the care of older people with nAMD and other long-term conditions.

Home-monitoring for neovascular age-related macular degeneration in older adults within the UK: the MONARCH diagnostic accuracy study.

Background: Most neovascular age-related macular degeneration treatments involve long-term follow-up of disease activity. Home monitoring would reduce the burden on patients and those they depend on for transport, and release clinic appointments for other patients. The study aimed to evaluate three home-monitoring tests for patients to use to detect active neovascular age-related macular degeneration compared with diagnosing active neovascular age-related macular degeneration by hospital follow-up. Objectives: There were five objectives: Estimate the accuracy of three home-monitoring tests to detect active neovascular age-related macular degeneration. Determine the acceptability of home monitoring to patients and carers and adherence to home monitoring. Explore whether inequalities exist in recruitment, participants' ability to self-test and their adherence to weekly testing during follow-up. Provide pilot data about the accuracy of home monitoring to detect conversion to neovascular age-related macular degeneration in fellow eyes of patients with unilateral neovascular age-related macular degeneration. Describe challenges experienced when implementing home-monitoring tests. Design: Diagnostic test accuracy cohort study, stratified by time since starting treatment. Setting: Six United Kingdom Hospital Eye Service macular clinics (Belfast, Liverpool, Moorfields, James Paget, Southampton, Gloucester). Participants: Patients with at least one study eye being monitored by hospital follow-up. Reference standard: Detection of active neovascular age-related macular degeneration by an ophthalmologist at hospital follow-up. Index tests: KeepSight Journal: paper-based near-vision tests presented as word puzzles. MyVisionTrack®: electronic test, viewed on a tablet device. MultiBit: electronic test, viewed on a tablet device. Participants provided test scores weekly. Raw scores between hospital follow-ups were summarised as averages. Results: Two hundred and ninety-seven patients (mean age 74.9 years) took part. At least one hospital follow-up was available for 317 study eyes, including 9 second eyes that became eligible during follow-up, in 261 participants (1549 complete visits). Median testing frequency was three times/month. Estimated areas under receiver operating curves were < 0.6 for all index tests, and only KeepSight Journal summary score was significantly associated with the lesion activity (odds ratio = 3.48, 95% confidence interval 1.09 to 11.13, p = 0.036). Older age and worse deprivation for home address were associated with lower participation (χ2 = 50.5 and 24.3, respectively, p < 0.001) but not ability or adherence to self-testing. Areas under receiver operating curves appeared higher for conversion of fellow eyes to neovascular age-related macular degeneration (0.85 for KeepSight Journal) but were estimated with less precision. Almost half of participants called a study helpline, most often due to inability to test electronically. Limitations: Pre-specified sample size not met; participants' difficulties using the devices; electronic tests not always available. Conclusions: No index test provided adequate test accuracy to identify lesion diagnosed as active in follow-up clinics. If used to detect conversion, patients would still need to be monitored at hospital. Associations of older age and worse deprivation with study participation highlight the potential for inequities with such interventions. Provision of reliable electronic testing was challenging. Future work: Future studies evaluating similar technologies should consider: Independent monitoring with clear stopping rules based on test performance. Deployment of apps on patients' own devices since providing devices did not reduce inequalities in participation and complicated home testing. Alternative methods to summarise multiple scores over the period preceding a follow-up. Trial registration: This trial is registered as ISRCTN79058224. Funding: This award was funded by the National Institute of Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 15/97/02) and is published in full in Health Technology Assessment; Vol. 28, No. 32. See the NIHR Funding and Awards website for further award information.

Treatment for neovascular age-related macular degeneration, the most common cause of sight loss in those over 50 years, involves regular eye injections and frequent follow-up appointments. This is inconvenient for patients and causes capacity issues in the hospital eye service. Finding tests that could be undertaken at home that could detect if a further injection and hospital appointment was required or not would increase capacity to see those at highest risk of sight loss and also reduce the burden on patients and their carers. We investigated three different visual function tests, one paper-based and two applications on an iPod Touch_TM tablet (Apple, Cupertino, CA, USA). We wanted to see if they could detect an increase in disease activity that would require treatment, compared to the decision by a retinal specialist at a traditional hospital eye outpatient visit based on clinical examination and retinal imaging. To encourage those without a smartphone or home internet to participate, we provided both an iPod Touch and Mobile Wireless-Fidelity device with a mobile contract. None of the tests performed well enough to safely monitor patients at home. Those who were willing to participate tended to be younger, had previous experience of using smartphones, sending e-mail and internet access and were more well-off than those who chose not to participate. Some participants also experienced difficulties with the devices provided and successfully uploading the data which were not related to the extent of previous information technology experience. There were also significant technical challenges for the research team. The study helpline was used heavily, considerably more than we anticipated. These tests are not ready to be used in this context. Future studies involving mobile health technology need to carefully consider how to reach those unlikely to participate and provide sufficient technical support to support long-term follow-up.

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.

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.

Cancer survivors with self-reported late effects: their health status, care needs and service utilisation.

OBJECTIVE: Cancer survivors (CSs) are at risk of developing late effects (LEs) associated with the disease and its treatment. This paper compares the health status, care needs and use of health services by CSs with LEs and CSs without LEs. METHODS: Cancer survivors (n = 613) were identified via the Northern Ireland Cancer Registry and invited to participate in a postal survey that was administered by their general practitioner. The survey assessed self-reported LEs, health status, health service use and unmet care needs. A total of 289 (47%) CSs responded to the survey, and 93% of respondents completed a LEs scale. RESULTS: Forty-one per cent (111/269) of CSs reported LEs. Survivors without LEs and survivors with LEs were comparable in terms of age and gender. The LEs group reported a significantly greater number of co-morbidities, lower physical health and mental health scores, greater overall health service use and more unmet needs. Unadjusted logistic regression analysis found that cancer site, time since diagnosis and treatment were significantly associated with reporting of LEs. CSs who received combination therapies compared with CSs who received single treatments were over two and a half times more likely to report LEs (OR = 2.63, 95% CI = 1.32-5.25) after controlling for all other variables. CONCLUSIONS: The CS population with LEs comprises a particularly vulnerable group of survivors who have multiple health care problems and needs and who require tailored care plans that take account of LEs and their impact on health-related quality of life.

Web psychosocial surveys in cancer survivorship--a methodological note.

The number of Internet surveys is increasing, and there is a need to examine critically their value in psychosocial cancer care research. This study explored the use of an online method of recruiting and surveying people affected by cancer. An online survey was designed to measure the health status and service needs of adult cancer survivors and caregivers. The online survey received 491 page visits; only 5% of visitors (13 survivors and 14 cancer caregivers) completed the online questionnaire. The average age of survivors and caregivers was 43 and 42 years, respectively. The majority of survivor and caregiver online respondents were female (23/27, 85%) and had been affected by cancer between 1 and 3 years previously (16/27, 59%). Our online research did not appear to be an effective method for recruiting and surveying the psychosocial health of cancer survivors. This study identified potential pitfalls and obstacles of online cancer care surveys particularly in relation to the age of cancer survivors, access to the Internet and the need to ensure surveys are easily and immediately accessible. Future Internet surveys should pay particular attention to the need to advertise and improve survey access via targeted and tailored techniques.

A comparative analysis of the health and well-being of cancer survivors to the general population.

BACKGROUND: The population of people surviving cancer is continually increasing and currently cancer survivors represent approximately 3.7% of the American population and 3% of the UK population. There is limited and inconclusive empirical evidence regarding the long-term health and well-being of cancer survivors. METHODS: Two hundred eighty-nine cancer survivors and 262 matched-age and sex patients from the same group of General (primary care) Practices completed postal questionnaires measuring health and well-being, health service utilisation and satisfaction and health care needs. MAIN RESULTS: Cancer survivors reported poorer health and well-being and health service utilisation than the general population. Despite this poorer health, the majority of cancer survivors reported satisfaction with services and almost two-thirds of the survivors did not report any needs. CONCLUSIONS: The majority of cancer survivors do not appear to require additional support services. There is, however, a subgroup of survivors who warrant specialist support, particularly survivors who are older, experience late effects and have had adjuvant treatments. Future research should focus on developing methods that could be used in routine clinical practice to identify 'at risk' or vulnerable patients and to provide appropriate and timely support.

An international review of the patterns and determinants of health service utilisation by adult cancer survivors.

BACKGROUND: There is a need to review factors related to health service utilisation by the increasing number of cancer survivors in order to inform care planning and the organisation and delivery of services. METHODS: Studies were identified via systematic searches of Medline, PsycINFO, CINAHL, Social Science Citation Index and the SEER-MEDICARE library. Methodological quality was assessed using STROBE; and the Andersen Behavioural Model was used as a framework to structure, organise and analyse the results of the review. RESULTS: Younger, white cancer survivors were most likely to receive follow-up screening, preventive care, visit their physician, utilise professional mental health services and least likely to be hospitalised. Utilisation rates of other health professionals such as physiotherapists were low. Only studies of health service use conducted in the USA investigated the role of type of health insurance and ethnicity. There appeared to be disparate service use among US samples in terms of ethnicity and socio-demographic status, regardless of type of health insurance provision s- this may be explained by underlying differences in health-seeking behaviours. Overall, use of follow-up care appeared to be lower than expected and barriers existed for particular groups of cancer survivors. CONCLUSIONS: Studies focussed on the use of a specific type of service rather than adopting a whole-system approach and future health services research should address this shortcoming. Overall, there is a need to improve access to care for all cancer survivors. Studies were predominantly US-based focussing mainly on breast or colorectal cancer. Thus, the generalisability of findings to other health-care systems and cancer sites is unclear. The Andersen Behavioural Model provided an appropriate framework for studying and understanding health service use among cancer survivors. The active involvement of physicians and use of personalised care plans are required in order to ensure that post-treatment needs and recommendations for care are met.

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.

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.

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.

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.