Tackling cancers of unmet need: the pancreatic cancer pathway

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Measuring the burden of treatment for chronic disease: implications of a scoping review of the literature

Background: Although there has been growing research on the burden of treatment, the current state of evidence on measuring this concept is unknown. This scoping review aimed to provide an overview of the current state of knowledge as well as clear recommendations for future research, within the context of chronic disease. Methods: Four health-based databases, Scopus, CINAHL, Medline, and PsychInfo, were comprehensively searched for peer-reviewed articles published between the periods of 2000–2016. Titles and abstracts were independently read by two authors. All discrepancies between the authors were resolved by a third author. Data was extracted using a standardized proforma and a comparison analysis was used in order to explore the key treatment burden measures and categorize them into three groups. Results: Database searching identified 1458 potential papers. After removal of duplications, and irrelevant articles by title, 1102 abstracts remained. An additional 22 papers were added via snowball searching. In the end, 101 full papers were included in the review. A large number of the studies involved quantitative measures and conceptualizations of treatment burden (n = 64; 63.4%), and were conducted in North America (n = 49; 48.5%). There was significant variation in how the treatment burden experienced by those with chronic disease was operationalized and measured. Conclusion: Despite significant work, there is still much ground to cover to comprehensively measure treatment burden for chronic disease. Greater qualitative focus, more research with cultural and minority populations, a larger emphasis on longitudinal studies and the consideration of the potential effects of “identity” on treatment burden, should be considered

Charting Complex Changes: Application of the eHealth Implementation Toolkit (e-HIT) in the Delivering Assisted Living Lifestyles at Scale (dallas) Programme

The 'dallas' (Delivering Assisted Living Lifestyles at Scale) programme is a UK-wide digital healthcare initiative that has been designed to support independent living, enhance preventative care, and improve lifestyles by harnessing the potential of e-health technologies and digital services. This short paper presents a brief update on one strand of the University of Glasgow evaluation of the dallas programme. We have used the e-Health Implementation Toolkit (e-HIT) to investigate processes involved in the implementation of e-health tools and digital services being developed and deployed across the dallas communities and to assess 'distance travelled' by communities from baseline to midpoint of a three year programme. Qualitative data analysis was guided by the Normalisation Process Theory (NPT) and Framework Analysis. The e-HIT scores indicated that the dallas communities had underestimated the amount of work involved in implementing at scale. Qualitative data analysis showed that communities have successfully navigated barriers in order to make significant progress in strategic areas, including the development of new models of partnership working resulting in brand recognition and agile service design. The dallas communities are now sharing lessons learned and generating new professional knowledge, skills and understanding across several key strategic areas required for operationalising the implementation of e-health technologies and digital services at scale. The new knowledge being generated through the dallas programme will contribute to the ongoing transformation of digitally enabled healthcare based on more personalised flexible models of provision which resonates with the current e-health policy environment

A study of clinical and information management processes in the surgical pre-assessment clinic

Establishing day-case surgery as the preferred hospital admission route for all eligible patients requires adequate preoperative assessment of patients in order to quickly distinguish those who will require minimum assessment and are suitable for day-case admission from those who will require more extensive management and will need to be admitted as inpatients. As part of a study to elucidate clinical and information management processes within the patient surgical pathway in NHS Scotland, we conducted a total of 10 in-depth semi-structured interviews during 4 visits to the Dumfries & Galloway Royal Infirmary surgical pre-assessment clinic. We modelled clinical processes using process-mapping techniques and analysed interview data using qualitative methods. We used Normalisation Process Theory as a conceptual framework to interpret the factors which were identified as facilitating or hindering information elucidation tasks and communication within the multi-disciplinary team. The pre-assessment clinic of Dumfries & Galloway Royal Infirmary was opened in 2008 in response to clinical and workflow issues which had been identified with former patient management practices in the surgical pathway. The preoperative clinic now operates under well established processes and protocols. The use of a computerised system for managing preoperative documentation substantially transformed clinical practices and facilitates communication and information-sharing among the multi-disciplinary team.ConclusionSuccessful deployment and normalisation of innovative clinical and information management processes was possible because both local and national strategic priorities were synergistic and the system was developed collaboratively by the POA staff and the health-board IT team, resulting in a highly contextualised operationalisation of clinical and information management processes. Further concerted efforts from a range of stakeholders are required to fully integrate preoperative assessment within the health-board surgical care pathway. A substantial – yet unfulfilled – potential benefit in embedding information technology in routine use within the preoperative clinic would be to improve the reporting of surgical outcomes

Using normalisation process theory to understand barriers and facilitators to implementing mindfulness-based stress reduction for people with multiple sclerosis

Objectives: To study barriers and facilitators to implementation of mindfulness-based stress reduction for people with multiple sclerosis. Methods: Qualitative interviews were used to explore barriers and facilitators to implementation of mindfulness-based stress reduction, including 33 people with multiple sclerosis, 6 multiple sclerosis clinicians and 2 course instructors. Normalisation process theory provided the underpinning conceptual framework. Data were analysed deductively using normalisation process theory constructs (coherence, cognitive participation, collective action and reflexive monitoring). Results: Key barriers included mismatched stakeholder expectations, lack of knowledge about mindfulness-based stress reduction, high levels of comorbidity and disability and skepticism about embedding mindfulness-based stress reduction in routine multiple sclerosis care. Facilitators to implementation included introducing a pre-course orientation session; adaptations to mindfulness-based stress reduction to accommodate comorbidity and disability and participants suggested smaller, shorter classes, shortened practices, exclusion of mindful-walking and more time with peers. Post-mindfulness-based stress reduction booster sessions may be required, and objective and subjective reports of benefit would increase clinician confidence in mindfulness-based stress reduction. Discussion: Multiple sclerosis patients and clinicians know little about mindfulness-based stress reduction. Mismatched expectations are a barrier to participation, as is rigid application of mindfulness-based stress reduction in the context of disability. Course adaptations in response to patient needs would facilitate uptake and utilisation. Rendering access to mindfulness-based stress reduction rapid and flexible could facilitate implementation. Embedded outcome assessment is desirable

Illness identity as an important component of candidacy: Contrasting experiences of help-seeking and access to care in cancer and heart disease

How and when we use health services or healthcare provision has dominated exploration of and debates around healthcare access. Levels of utilisation are assumed as a proxy for access. Yet, focusing on utilisation conceals an important aspect of the access conundrum: the relationships that patients and potential patients have with the healthcare system and the professionals within those systems. Candidacy has been proposed as an antidote to traditional utilisation models. The Candidacy construct offers the ability to include patient-professional aspects alongside utilisation and thus promotes a deeper understanding of access. Originally applied to healthcare access for vulnerable populations, additional socio-demographic factors, including age and ethnicity, have also been shown to influence the Candidacy process. Here we propose a further extension of the Candidacy construct and illustrate the importance of illness identities when accessing healthcare. Drawing on a secondary data analysis of three data sets of qualitative interviews from colorectal cancer and heart failure patients we found that though similar access issues are apparent pre-diagnosis, diagnosis marks a critical juncture in the experience of access. Cancer patients describe a person-centred responsive healthcare system where their patienthood requires only modest assertion. Cancer speaks for itself. In marked contrast heart failure patients, describe struggling within a seemingly impermeable system to understand their illness, its implications and their own legitimacy as patients. Our work highlights the pressing need for healthcare professionals, systems and policies to promote a person centred approach, which is responsive and timely, regardless of illness category. To achieve this, attitudes regarding the importance or priority afforded to different categories of illness need to be tackled as they directly influence ideas of Candidacy and consequently access and experiences of care

A mixed methods systematic review of the effects of patient online self-diagnosing in the ‘smart-phone society’ on the healthcare professional-patient relationship and medical authority

Background: As technology continues to advance, the internet is becoming increasingly popular. Self-diagnosis and health information seeking online is growing more common and it will be important to understand the influence this may have on the patient-healthcare professional relationship. Methods: A mixed-method systematic review of quantitative, qualitative and mixed method studies concerning the public and healthcare professionals’ perceptions of online self-diagnosis and health information seeking and how this can impact the patient-healthcare professional relationship. We searched MEDLINE, EMBASE, CINAHL, ACM & SCOPUS between 2007 and 2018. Relevant data were extracted, and a thematic analysis was conducted and conceptualised using the Normalisation Process Theory framework. Results: Of 6107 records identified, 25 articles met the review eligibility criteria which included 16 qualitative, 8 quantitative and 1 mixed method study. The findings indicated that patients found the internet as a complementary information source alongside healthcare professionals. Health care professionals were perceived to be the most reliable and valued information source. People feel responsible for their own health and find the internet to be a source that provides information rapidly with accessibility at their convenience. Most healthcare professionals agreed on the importance of collaboration with patients and the need to develop a partnership and shared decision-making process but struggled to find time in the consultation to do so efficiently. Some healthcare professionals felt that the internet was advantageous for patients looking after their own health, while others felt it was due to a lack of trust in their expertise. Patients tended to present information to the healthcare professional to support the therapeutic relationship rather than to challenge it and to become more involved in the decision-making process of their healthcare. Conclusion: The results of this review suggests that patients value healthcare professionals as a source of medical advice more than the internet. While health professionals’ views were mixed our findings indicate that online health information seeking can potentially improve the patient-healthcare professional relationship as patients reported they usually conducted an online search to form a partnership with the healthcare professional as opposed to trying to prove them wrong

Relationship of depression screening in cardiometabolic disease with vascular events and mortality: findings from a large primary care cohort with 4 years follow-up

Aims: Benefits of routine depression screening for cardiometabolic disease patients remain unclear. We examined the association between depression screening and all-cause mortality and vascular events in cardiometabolic disease patients. Methods and results: 125 143 patients with cardiometabolic diseases (coronary heart disease, diabetes or previous stroke) in the UK participated in primary care chronic disease management in 2008/09, which included depression screening using the Hospital Anxiety and Depression Score. 10 670 receiving depression treatment exempted, 35 537 screened, while 78 936 not screened. We studied all-cause mortality and vascular events at 4 years, by electronic data linkage of 124 414 patients (99.4%) on primary care registers to hospital discharge and mortality records and used Cox proportional hazards on matched data using propensity score. Mean age for the screened and not screened population was 69 years (standard deviation—SD 11.9) and 67 years (SD 14.3), respectively; 58% (20 658) of the screened population were men and 65.3% (22 726) were socioeconomically deprived, compared with 54.2% (42 727) and 67.4% (51 686), respectively, in the not screened population. The screened population had lower all-cause mortality (Hazard Ratio—HR 0.89) and vascular events (HR 0.85) in the matched data of N = 21 893 patients each in the screened and the unscreened groups. Conclusion: Depression screening was associated with a reduction in all-cause mortality and vascular events in patients with cardiometabolic diseases. The uptake of screening was poor for unknown reasons. Reverse causality and confounding by disease severity and quality of care are important possible limitations. Further research to determine reproducibility and explore underlying mechanisms is merited

Relationship between blood pressure values, depressive symptoms and cardiovascular outcomes in patients with cardiometabolic disease

We studied joint effect of blood pressure-BP and depression on risk of major adverse cardiovascular outcome in patients with existing cardiometabolic disease. A cohort of 35537 patients with coronary heart disease, diabetes or stroke underwent depression screening and BP was recorded concurrently. We used Cox’s proportional hazards to calculate risk of major adverse cardiovascular event-MACE (myocardial infarction/heart failure/stroke or cardiovascular death) over 4 years associated with baseline BP and depression. 11% (3939) had experienced MACE within 4 years. Patients with very high systolic BP-SBP (160-240) hazard ratio-HR 1.28 and with depression (HR 1.22) at baseline had significantly higher adjusted risk. Depression had significant interaction with SBP in risk prediction (p=0.03). Patients with combination of SBP and depression at baseline had 83% higher adjusted risk of MACE, as compared to patients with reference SBP and without depression. Patients with cardiometabolic disease and comorbid depression may benefit from closer monitoring of SBP

Risk factors and mortality associated with multimorbidity in people with stroke or transient ischaemic attack: a study of 8,751 UK Biobank participants

Background: Multimorbidity is common in stroke, but the risk factors and effects on mortality remain poorly understood. Objective: To examine multimorbidity and its associations with sociodemographic/lifestyle risk factors and all-cause mortality in UK Biobank participants with stroke or transient ischaemic attack (TIA). Design: Data were obtained from an anonymized community cohort aged 40–72 years. Overall, 42 comorbidities were self-reported by those with stroke or TIA. Relative risk ratios demonstrated associations between participant characteristics and number of comorbidities. Hazard ratios demonstrated associations between the number and type of comorbidities and all-cause mortality. Results were adjusted for age, sex, socioeconomic status, smoking, and alcohol intake. Data were linked to national mortality data. Median follow-up was 7 years. Results: Of 8,751 participants (mean age 60.9±6.7 years) with stroke or TIA, the all-cause mortality rate over 7 years was 8.4%. Over 85% reported ≥1 comorbidities. Age, socioeconomic deprivation, smoking and less frequent alcohol intake were associated with higher levels of multimorbidity. Increasing multimorbidity was associated with higher all-cause mortality. Mortality risk was double for those with ≥5 comorbidities compared to those with none. Having cancer, coronary heart disease, diabetes, or chronic obstructive pulmonary disease significantly increased mortality risk. Presence of any cardiometabolic comorbidity significantly increased mortality risk, as did any non-cardiometabolic comorbidity. Conclusions: In stroke survivors, the number of comorbidities may be a more helpful predictor of mortality than type of condition. Stroke guidelines should take greater account of comorbidities, and interventions are needed that improve outcomes for people with multimorbidity and stroke