Phase 1 pilot study of e-mail support for people with long term conditions using the Internet.
ABSTRACT: Use of the Internet for people with Long Term Conditions (LTCs) can have a positive effect on knowledge, social support, behavioural and clinical outcomes, yet there is concern that a 'digital divide' prevents some patients from benefitting. While some patients do not have access to the Internet, others that do may still lack expertise or the confidence to make full use of it. The aim of this pilot study was to develop an intervention and test methods for a definitive randomised controlled trial (RCT) of anonymous personal online email support for patients in this latter group.Recruitment success was evaluated by the number and appropriateness of participants recruited. A personalised e-health support intervention was developed. The provisional primary outcome was the extent to which the Internet affected the participants' confidence in dealing with their LTC. Primary outcome, seven process measures and two secondary outcomes measures were evaluated for completeness of data and sensitivity to detect changes.Thirty nine participants were recruited, 29 after personally receiving a leaflet, seven via email advertising, and three via leaflets left in waiting areas. Most participants (61%) were aged over 60. The majority (21/38) rated themselves as experienced Internet users although only 5/38 had used discussion forums for their LTC. Piloting the intervention identified support needed as: (i) technical help with some websites, (ii) advice about issues such as anonymity, (iii) help in judging information quality, (iv) identification of relevant information (via 'Information Prescriptions'), (v) motivational support to try new sites. Attrition was fairly high: 20/39 completed follow up questionnaires. Three process measures showed ceiling effects and two had too many missing values to be useable.E-health support is a promising way of addressing the problems faced by older generation e-health seekers. Face-to-face leaflet distribution recruited sufficient numbers but additional locations other than hospital should be tried to recruit Internet novices with LTCs. An RCT is feasible and necessary to evaluate the potential benefits of anonymous email support. Our methods could be used by other researchers studying Internet use by people with LTCs.
Project description:OBJECTIVE:The aim of this study was to validate a new generic patient-reported outcome measure, the Long-Term Conditions Questionnaire (LTCQ), among a diverse sample of health and social care users in England. DESIGN:Cross-sectional validation survey. Data were collected through postal surveys (February 2016-January 2017). The sample included a healthcare cohort of patients recruited through primary care practices, and a social care cohort recruited through local government bodies that provide social care services. PARTICIPANTS:1211 participants (24% confirmed social care recipients) took part in the study. Healthcare participants were recruited on the basis of having one of 11 specified long-term conditions (LTCs), and social care participants were recruited on the basis of receiving social care support for at least one LTC. The sample exhibited high multimorbidity, with 93% reporting two or more LTCs and 43% reporting a mental health condition. OUTCOME MEASURES:The LTCQ's construct validity was tested with reference to the EQ-5D (5-level version), the Self-Efficacy for Managing Chronic Disease scale, an Activities of Daily Living scale and the Bayliss burden of morbidity scale. RESULTS:Low levels of missing data for each item indicate acceptability of the LTCQ across the sample. The LTCQ exhibits high internal consistency (Cronbach's ?=0.95) across the scale's 20 items and excellent test-retest reliability (intraclass correlation coefficient=0.94, 95%?CI 0.93 to 0.95). Associations between the LTCQ and all reference measures were moderate to strong and in the expected directions, indicating convergent construct validity. CONCLUSIONS:This study provides evidence for the reliability and validity of the LTCQ, which has potential for use in both health and social care settings. The LTCQ could meet a need for holistic outcome measurement that goes beyond symptoms and physical function, complementing existing measures to capture fully what it means to live well with LTCs.
Project description:BACKGROUND:There is a need to deliver smoking cessation support at a population level, both in developed and developing countries. Studies on internet-based and mobile phone-based smoking cessation interventions have shown that these methods can be as effective as other methods of support, and they can have a wider reach at a lower cost. OBJECTIVE:This randomized controlled trial (RCT) aimed to compare, on a population level, the efficacy of an identical, tailored smoking cessation intervention delivered by mobile text messaging versus email. METHODS:We conducted a nationwide 2-arm, double-blinded, fully automated RCT, close to a real-world setting, in Norway. We did not offer incentives to increase participation and adherence or to decrease loss to follow-up. We recruited users of the website, slutta.no, an open, free, multi-component Norwegian internet-based smoking cessation program, from May 2010 until October 2012. Enrolled smokers were considered as having completed a time point regardless of their response status if it was 1, 3, 6, or 12 months post cessation. We assessed 7315 participants using the following inclusion criteria: knowledge of the Norwegian language, age 16 years or older, ownership of a Norwegian cell phone, having an email account, current cigarette smoker, willingness to set a cessation date within 14 days (mandatory), and completion of a baseline questionnaire for tailoring algorithms. Altogether, 6137 participants were eligible for the study and 4378 participants (71.33%) provided informed consent to participate in the smoking cessation trial. We calculated the response rates for participants at the completed 1, 3, 6, and 12 months post cessation. For each arm, we conducted an intention-to-treat (ITT) analysis for each completed time point. The main outcome was 7-day self-reported point prevalence abstinence (PPA) at the completed 6 months post cessation. We calculated effect size of the 7-day self-reported PPA in the text message arm compared with the email arm as odds ratios (ORs) with 95% CIs for the 4 time points post cessation. RESULTS:At 6 months follow-up, 21.06% (384/1823) of participants in the text message arm and 18.62% (333/1788) in the email arm responded (P=.07) to the surveys. In the ITT analysis, 11.46% (209/1823) of participants in the text message arm compared with 10.96% (196/1788) in the email arm (OR 1.05, 95% CI 0.86-1.30) reported to have achieved 7 days PPA. CONCLUSIONS:This nationwide, double-blinded, large, fully automated RCT found that 1 in 9 enrolled smokers reported 7-day PPA in both arms, 6 months post cessation. Our study found that identical smoking cessation interventions delivered by mobile text messaging and email may be equally successful at a population level. TRIAL REGISTRATION:ClinicalTrials.gov NCT01103427; https://clinicaltrials.gov/ct2/show/NCT01103427.
Project description:Background:Child maltreatment is associated with long-term conditions (LTCs) in adulthood. Its relationship to multimorbidity (?2 LTCs) is less clear. We explore the relationship between child maltreatment, multimorbidity and factors complicating management. Methods:Cross-sectional analysis of 157,357 UK Biobank participants. Experience of four maltreatment types (physical/sexual/emotional/neglect) was identified. We explored the relationship between type, number and frequency of maltreatment and LTC count (0, 1, 2, 3, ?4) using multinomial logistic regression. Binary logistic regression assessed the relationship between maltreatment and self-rated health, loneliness, social isolation, frailty and widespread pain in those with multimorbidity, adjusting for sociodemographics and lifestyle factors. Results:52,675 participants (33%) experienced ?1 type of maltreatment; 983 (0.6%) experienced all four. Type, frequency and number of types of maltreatment were associated with higher LTC count. People experiencing four types of maltreatment were 5 times as likely to have a LTC count of ?4 as those experiencing none (odds ratio (OR): 5.16; 99% confidence interval (CI): 3.77-7.07). Greater number of types of maltreatment was associated with higher prevalence of combined physical/mental health LTCs (OR: 2.99; 99% CI: 2.54-3.51 for four types of maltreatment). Compared to people who reported no maltreatment, people experiencing all four types of maltreatment were more likely to have poor self-rated health (OR: 3.56; 99% CI: 2.58-4.90), loneliness (OR: 3.16; 99% CI: 2.17-4.60), social isolation (OR: 1.45; 99% CI: 1.03-2.05), widespread pain (OR: 3.19; 99% CI: 1.87-5.44) and frailty (OR: 3.21; 99% CI: 2.04-5.05). Conclusion:Peoplewith a history of maltreatment have higher LTC counts and potentially more complicated management needs reinforcing calls for early intervention.
Project description:Aims:To examine the number and type of co-morbid long-term health conditions (LTCs) and their associations with all-cause mortality in an atrial fibrillation (AF) population. Methods and results:Community cohort participants (UK Biobank n?=?502?637) aged 37-73?years were recruited between 2006 and 2010. Self-reported LTCs (n?=?42) identified in people with AF at baseline. All-cause mortality was available for a median follow-up of 7?years (interquartile range 76-93?months). Hazard ratios (HRs) examined associations between number and type of co-morbid LTC and all-cause mortality, adjusting for age, sex, socio-economic status, smoking, and anticoagulation status. Three thousand six hundred fifty-one participants (0.7% of the study population) reported AF; mean age was 61.9?years. The all-cause mortality rate was 6.7% (248 participants) at 7?years. Atrial fibrillation participants with??4 co-morbidities had a six-fold higher risk of mortality compared to participants without any LTC. Co-morbid heart failure was associated with higher risk of mortality [HR 2.96, 95% confidence interval (CI) 1.83-4.80], whereas the presence of co-morbid stroke did not have a significant association. Among non-cardiometabolic conditions, presence of chronic obstructive pulmonary disease (HR 3.31, 95% CI 2.14-5.11) and osteoporosis (HR 3.13, 95% CI 1.63-6.01) was associated with a higher risk of mortality. Conclusion:Survival in middle-aged to older individuals with self-reported AF is strongly correlated with level of multimorbidity. This group should be targeted for interventions to optimize their management, which in turn may potentially reduce the impact of their co-morbidities on survival. Future AF clinical guidelines need to place greater emphasis on the issue of co-morbidity.
Project description:BACKGROUND:It is now well recognised that the risk of severe COVID-19 increases with some long-term conditions (LTCs). However, prior research primarily focuses on individual LTCs and there is a lack of data on the influence of multimorbidity (?2 LTCs) on the risk of COVID-19. Given the high prevalence of multimorbidity, more detailed understanding of the associations with multimorbidity and COVID-19 would improve risk stratification and help protect those most vulnerable to severe COVID-19. Here we examine the relationships between multimorbidity, polypharmacy (a proxy of multimorbidity), and COVID-19; and how these differ by sociodemographic, lifestyle, and physiological prognostic factors. METHODS AND FINDINGS:We studied data from UK Biobank (428,199 participants; aged 37-73; recruited 2006-2010) on self-reported LTCs, medications, sociodemographic, lifestyle, and physiological measures which were linked to COVID-19 test data. Poisson regression models examined risk of COVID-19 by multimorbidity/polypharmacy and effect modification by COVID-19 prognostic factors (age/sex/ethnicity/socioeconomic status/smoking/physical activity/BMI/systolic blood pressure/renal function). 4,498 (1.05%) participants were tested; 1,324 (0.31%) tested positive for COVID-19. Compared with no LTCs, relative risk (RR) of COVID-19 in those with 1 LTC was no higher (RR 1.12 (CI 0.96-1.30)), whereas those with ?2 LTCs had 48% higher risk; RR 1.48 (1.28-1.71). Compared with no cardiometabolic LTCs, having 1 and ?2 cardiometabolic LTCs had a higher risk of COVID-19; RR 1.28 (1.12-1.46) and 1.77 (1.46-2.15), respectively. Polypharmacy was associated with a dose response higher risk of COVID-19. All prognostic factors were associated with a higher risk of COVID-19 infection in multimorbidity; being non-white, most socioeconomically deprived, BMI ?40 kg/m2, and reduced renal function were associated with the highest risk of COVID-19 infection: RR 2.81 (2.09-3.78); 2.79 (2.00-3.90); 2.66 (1.88-3.76); 2.13 (1.46-3.12), respectively. No multiplicative interaction between multimorbidity and prognostic factors was identified. Important limitations include the low proportion of UK Biobank participants with COVID-19 test data (1.05%) and UK Biobank participants being more affluent, healthier and less ethnically diverse than the general population. CONCLUSIONS:Increasing multimorbidity, especially cardiometabolic multimorbidity, and polypharmacy are associated with a higher risk of developing COVID-19. Those with multimorbidity and additional factors, such as non-white ethnicity, are at heightened risk of COVID-19.
Project description:OBJECTIVE:To determine whether changes in emergency admission rates during transition from paediatric to adult hospital services differed in children and young people (CYP) with and without underlying long-term conditions (LTCs). DESIGN:Cross-sectional study. SETTING:Emergency admissions between 2009 and 2011 recorded in the Hospital Episode Statistics Admitted Patient Care data in England. PARTICIPANTS:763 199 CYP aged 10-24 years with and without underlying LTCs (LTCs were defined using the International Classification of Diseases, 10th Revision codes recorded in the past 5?years). PRIMARY AND SECONDARY OUTCOME MEASURES:We calculated emergency admission rates before (10-15 years) and after transition (19-24 years), stratified by gender, LTC and primary diagnosis. We used negative binomial regression to estimate adjusted incidence rate ratios (IRRs). RESULTS:We included 1 109 978 emergency admissions, of which 63.2% were in children with LTCs. The emergency admission rate increased across the age of transition for all CYP, more so for those with LTCs (IRRLTC: 1.55, 99%?CI 1.47 to 1.63), compared with those without (IRRnoLTC: 1.21, 99%?CI 1.18 to 1.23). The rates increased most rapidly for CYP with mental health problems, MEDReG (metabolic, endocrine, digestive, renal, genitourinary) disorders, and multiple LTCs (both genders) and respiratory disorders (female only). Small or no increased rates were found for CYP without LTCs and for those with cancer or cardiovascular disease. Increases in length of stay were driven by long admissions (10+ days) for a minority (1%) of CYP with mental health problems and potentially psychosomatic symptoms. Non-specific symptoms related to abdominal pain (girls only), gastrointestinal and respiratory problems were the most frequent primary diagnoses. CONCLUSIONS:The increased rates and duration of emergency admissions and predominance of non-specific admission diagnoses during transition in CYP with underlying LTCs may reflect unmet physical or mental health needs.
Project description:<h4>Background</h4>Recruiting and retaining participants in randomised controlled trials (RCTs) is challenging. Digital tools, such as social media, data mining, email or text-messaging, could improve recruitment or retention, but an overview of this research area is lacking. We aimed to systematically map the characteristics of digital recruitment and retention tools for RCTs, and the features of the comparative studies that have evaluated the effectiveness of these tools during the past 10 years.<h4>Methods</h4>We searched Medline, Embase, other databases, the Internet, and relevant web sites in July 2018 to identify comparative studies of digital tools for recruiting and/or retaining participants in health RCTs. Two reviewers independently screened references against protocol-specified eligibility criteria. Included studies were coded by one reviewer with 20% checked by a second reviewer, using pre-defined keywords to describe characteristics of the studies, populations and digital tools evaluated.<h4>Results</h4>We identified 9163 potentially relevant references, of which 104 articles reporting 105 comparative studies were included in the systematic map. The number of published studies on digital tools has doubled in the past decade, but most studies evaluated digital tools for recruitment rather than retention. The key health areas investigated were health promotion, cancers, circulatory system diseases and mental health. Few studies focussed on minority or under-served populations, and most studies were observational. The most frequently-studied digital tools were social media, Internet sites, email and tv/radio for recruitment; and email and text-messaging for retention. One quarter of the studies measured efficiency (cost per recruited or retained participant) but few studies have evaluated people's attitudes towards the use of digital tools.<h4>Conclusions</h4>This systematic map highlights a number of evidence gaps and may help stakeholders to identify and prioritise further research needs. In particular, there is a need for rigorous research on the efficiency of the digital tools and their impact on RCT participants and investigators, perhaps as studies-within-a-trial (SWAT) research. There is also a need for research into how digital tools may improve participant retention in RCTs which is currently underrepresented relative to recruitment research.<h4>Registration</h4>Not registered; based on a pre-specified protocol, peer-reviewed by the project's Advisory Board.
Project description:BACKGROUND: The risk of depression is increased in people with long term conditions (LTCs) and is associated with poorer patient outcomes for both the depressive illness and the LTC, but often remains undetected and poorly managed. The aim of this study was to identify and explore barriers to detecting and managing depression in primary care in people with two exemplar LTCs: diabetes and coronary heart disease (CHD). METHODS: Qualitative in-depth interviews were conducted with 19 healthcare professionals drawn predominately from primary care, along with 7 service users and 3 carers (n = 29). One focus group was then held with a set of 6 healthcare professionals and a set of 7 service users and 1 carer (n = 14). Interviews and the focus group were digitally recorded, transcribed verbatim, and analysed independently. The two data sets were then inspected for commonalities using a constant comparative method, leading to a final thematic framework used in this paper. RESULTS: Barriers to detecting and managing depression in people with LTCs in primary care exist: i) when practitioners in partnership with patients conceptualise depression as a common and understandable response to the losses associated with LTCs - depression in the presence of LTCs is normalised, militating against its recognition and treatment; ii) where highly performanced managed consultations under the terms of the Quality and Outcomes Framework encourage reductionist approaches to case-finding in people with CHD and diabetes, and iii) where there is uncertainty among practitioners about how to negotiate labels for depression in people with LTCs in ways that might facilitate shared understanding and future management. CONCLUSION: Depression was often normalised in the presence of LTCs, obviating rather than facilitating further assessment and management. Furthermore, structural constraints imposed by the QOF encouraged reductionist approaches to case-finding for depression in consultations for CHD and diabetes. Future work might focus on how interventions that draw on the principles of the chronic care model, such as collaborative care, could support primary care practitioners to better recognise and manage depression in patients with LTCs.
Project description:BACKGROUND:Internet-based Smoking Cessation Interventions could help pregnant women quit smoking, especially those who do not wish to, or cannot, access face-to-face or telephone support. This study aimed to preliminarily evaluate the effectiveness and usage of a fully automated smoking cessation website targeted to pregnancy, 'MumsQuit', and obtain an initial effect-size estimate for a full scale trial. METHODS:We recruited 200 UK-based pregnant adult smokers online to a two-arm double-blind pilot RCT assessing the effectiveness of MumsQuit compared with an information-only website. MumsQuit was adapted from a generic internet smoking cessation intervention, 'StopAdvisor'. The primary outcome was self-reported continuous 4-week abstinence assessed at 8 weeks post-baseline. Secondary outcomes were automatically collected data on intervention usage. RESULTS:Participants smoked 15 cigarettes per day on average, 73% were in the first trimester of their pregnancy, 48% were from lower socioeconomic backgrounds, and 43% had never used evidence-based cessation support. The point estimate of odds ratio for the primary outcome was 1.5 (95% CI=0.8-2.9; 28% vs. 21%). Compared with control participants, those in the MumsQuit group logged in more often (3.5 vs. 1.3, p<0.001), viewed more pages (67.4 vs. 5.7, p<0.001) and spent more time browsing the website (21.3min vs. 1.0min, p<0.001). CONCLUSIONS:MumsQuit is an engaging and potentially helpful form of support for pregnant women who seek cessation support online, and merits further development and evaluation in a full-scale RCT.
Project description:<h4>Background</h4>Long-term conditions (LTCs) are increasingly important determinants of quality of life and healthcare costs in populations worldwide. The Chronic Care Model and the NHS and Social Care Long Term Conditions Model highlight the use of consultations where patients are invited to attend a consultation with a primary care clinician (practice nurse or GP) to complete a review of the management of the LTC. We report a qualitative study in which we focus on the ways in which QOF (Quality and Outcomes Framework) shapes routine review consultations, and highlight the tensions exposed between patient-centred consulting and QOF-informed LTC management.<h4>Methods</h4>A longitudinal qualitative study. We audio-recorded consultations of primary care practitioners with patients with LTCs. We then interviewed both patients and practitioners using tape-assisted recall. Patient participants were followed for three months during which the research team made weekly contact and invited them to complete weekly logs about their health service use. A second interview at three months was conducted with patients. Analysis of the data sets used an integrative framework approach.<h4>Results</h4>Practitioners view consultations as a means of 'surveillance' of patients. Patients present themselves, often passively, to the practitioner for scrutiny, but leave the consultation with unmet biomedical, informational and emotional needs. Patients perceived review consultations as insignificant and irrelevant to the daily management of their LTC and future healthcare needs. Two deviant cases, where the requirements of the 'review' were subsumed to meet the patient's needs, focused on cancer and bereavement.<h4>Conclusions</h4>Routine review consultations in primary care focus on the biomedical agenda set by QOF where the practitioner is the expert, and the patient agenda unheard. Review consultations shape patients' expectations of future care and socialize patients into becoming passive subjects of 'surveillance'. Patient needs outside the narrow protocol of the review are made invisible by the process of review except in extreme cases such as anticipating death and bereavement. We suggest how these constraints might be overcome.