Publications by authors named "Caroline Sanders"

130 Publications

Visual impairment and medication safety: a protocol for a scoping review.

Syst Rev 2021 Sep 15;10(1):248. Epub 2021 Sep 15.

NIHR Greater Manchester Patient Safety Translational Research Centre, University of Manchester, Suite 11, 7th floor, Williamson Building, Oxford Road M13 9PL, Manchester, UK.

Background: The number of individuals with a visual impairment in the UK was estimated a few years ago to be around 1.8 million. People can be visually impaired from birth, childhood, early adulthood or later in life. Those with visual impairment are subject to health inequities and increased risk for patient safety incidents in comparison to the general population. They are also known to be at an increased risk of experiencing medication errors compared to those without visual impairment. In view of this, this review aims to understand the issues of medication safety for VI people.

Methods/design: Four electronic bibliographic databases will be searched: MEDLINE, Embase, PsycInfo and CINAHL. Our search strategy will include search combinations of two key blocks of terms. Studies will not be excluded based on design. Included studies will be empirical studies. They will include studies that relate to both medication safety and visual impairment. Two reviewers (SG and LR) will screen all the titles and abstracts. SG, LR, RM, SCS and PL will perform study selection and data extraction using standard forms. Disagreements will be resolved through discussion or third party adjudication. Data to be collected will include study characteristics (year, objective, research method, setting, country), participant characteristics (number, age, gender, diagnoses), medication safety incident type and characteristics.

Discussion: The review will summarise the literature relating to medication safety and visual impairment.
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http://dx.doi.org/10.1186/s13643-021-01800-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8442271PMC
September 2021

Comparative 4-year risk and type of hospital admission among homeless and housed emergency department attendees: longitudinal study of hospital records in England 2013-2018.

BMJ Open 2021 07 26;11(7):e049811. Epub 2021 Jul 26.

Manchester Centre for Health Economics, School of Health Sciences, The University of Manchester, Manchester, UK.

Objectives: People experiencing homelessness are frequent users of secondary care. Currently, there is no study of potentially preventable admissions for homeless patients in England. We aim to estimate the number of potentially preventable hospital admissions for homeless patients and compare to housed patients with similar characteristics.

Design: Retrospective matched cohort study.

Setting: Hospitals in England.

Participants: 16 161 homeless patients and 74 780 housed patients aged 16-75 years who attended an emergency department (ED) in England in 2013/2014, matched on the basis of age, sex, ED attended and primary diagnosis.

Primary And Secondary Outcome Measures: Annual counts of admissions, emergency admissions, ambulatory care-sensitive (ACS) emergency admissions, acute ACS emergency admissions and chronic ACS emergency admissions over the following 4 years (2014/2015-2017/2018). We additionally compare the prevalence of specific ACS conditions for homeless and housed patients.

Results: Mean admissions per 1000 patients per year were 470 for homeless patients and 230 for housed patients. Adjusted for confounders, annual admissions were 1.79 times higher (incident rate ratio (IRR)=1.79; 95% CI 1.69 to 1.90), emergency admissions 2.08 times higher (IRR=2.08; 95% CI 1.95 to 2.21) and ACS admissions 1.65 times higher (IRR=1.65; 95% CI 1.51 to 1.80), compared with housed patients. The effect was greater for acute (IRR=1.78; 95% CI 1.64 to 1.93) than chronic (IRR=1.45; 95% CI 1.27 to 1.66) ACS conditions. ACS conditions that were relatively more common for homeless patients were cellulitis, convulsions/epilepsy and chronic angina.

Conclusions: Homeless patients use hospital services at higher rates than housed patients, particularly emergency admissions. ACS admissions of homeless patients are higher which suggests some admissions may be potentially preventable with improved access to primary care. However, these admissions comprise a small share of total admissions.
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http://dx.doi.org/10.1136/bmjopen-2021-049811DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8314693PMC
July 2021

Using patient-generated health data in clinical practice: How timing influences its function in rheumatology outpatient consultations.

Patient Educ Couns 2021 Jun 26. Epub 2021 Jun 26.

Centre for Health Informatics, University of Manchester, Manchester, UK.

Objective: Utilizing patient-generated health data (PGHD) in clinical consultations and informing clinical and shared decision-making processes has the potential to improve clinical practice but has proven challenging to implement. Looking at consultations between people with rheumatoid arthritis (RA) and rheumatologists, this study examines when and how daily PGHD was discussed in outpatient consultations.

Methods: We conducted a secondary qualitative analysis of 17 audio-recorded research outpatient consultations using thematic and interactional approaches.

Results: Clinicians decided when to look at the PGHD and what symptoms to prioritise during the consultation. When PGHD was introduced early in consultations, it was usually used to invite patients to collaborate (elicit new information). When introduced later, PGHD was used to corroborate patient accounts and to convince the patient about proposed actions and treatments. Clinicians occasionally disregarded PGHD if it did not fit into their clinical assessment.

Conclusion: The time that PGHD is introduced may influence how PGHD is used in consultations. Further research is needed to understand how best to empower patients to discuss PGHD.

Practice Implications: Educating patients and clinicians about the importance of timing and strategies when using PGHD in consultations may help promote shared decision-making.
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http://dx.doi.org/10.1016/j.pec.2021.06.027DOI Listing
June 2021

Managing returns to prison from medium-secure services: qualitative study.

BJPsych Open 2021 Jun 8;7(4):e111. Epub 2021 Jun 8.

Centre for Mental Health and Safety, University of Manchester, UK.

Background: Little is known about factors that influence discharge decision-making for people admitted to medium-secure services from prison, particularly for those who are returned to prison following treatment.

Aims: To explore the organisational influences on care pathways through medium-secure services for those admitted from prison.

Method: We recruited 24 clinicians via purposive and snowball sampling; 13 shared their experiences via a focus group, and 11 shared their experiences via individual semi-structured interviews. A thematic analysis was conducted, producing three overarching themes: maintenance of throughput and service provision, class of two systems, and desirable and undesirable patients.

Results: Data indicated external factors that direct and, at times, limit clinicians' pathway decisions, including commissioning criteria and legal status under the Mental Health Act 1983 and within the criminal courts system (i.e. whether on remand or sentenced). These factors also influence how clinicians view the role and function of medium-secure services within the wider forensic mental health system, and therefore the types of patients that are deemed 'appropriate' for continued treatment when making discretionary pathway decisions.

Conclusions: There remains a deficit in adequate resources to meet the mental health needs of prisoners who are admitted to medium-secure services. To meet the clinical need of all admissions, criteria for prolonged treatment in medium-secure services needs to be reconsidered, and it is likely that provision for the medium-secure hospital estate will need to increase substantially if effective rehabilitation of those who transfer from prison is to take place.
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http://dx.doi.org/10.1192/bjo.2021.928DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8220853PMC
June 2021

Children's Independent Mobility and Physical Activity during the COVID-19 Pandemic: A Qualitative Study with Families.

Int J Environ Res Public Health 2021 04 23;18(9). Epub 2021 Apr 23.

School of Nursing, University of Northern British Columbia, Prince George, BC V2N 4Z9, Canada.

Children's independent mobility (CIM) is the freedom of children to move around their neighbourhood without adult supervision and is closely related to overall physical activity participation. The COVID-19 pandemic has impacted movement behaviours for children, with evidence indicating a decrease in physical activity. The aim of this study was to explore experiences of CIM and physical activity during the COVID-19 pandemic from the perspectives of children and their parents. We completed 21 family (at least one parent and one child aged 7-12) semi-structured interviews with 45 participants living in small urban and rural areas of British Columbia, Canada. Three themes were identified through a reflexive thematic analysis: (1) keeping everyone safe from COVID-19; (2) change in pattern and types of activity; (3) social impacts with family, friends, and community. Participants expressed a perceived increase in unstructured activity and a decrease in structured physical activity during the pandemic, which many parents viewed as a positive change. Parents and children indicated negative feelings due to spending less time with peers and reflected positively about spending more time with family. Parents and children expressed fear and anxiety in trying to keep their families safe from virus spread and creativity in adapting play behaviours. Findings highlight the impact of the pandemic on social friendship networks for families and a shift in activity patterns for children toward unstructured play.
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http://dx.doi.org/10.3390/ijerph18094481DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8122942PMC
April 2021

A qualitative exploration of patients' experiences, needs and expectations regarding online access to their primary care record.

BMJ Open 2021 03 11;11(3):e044221. Epub 2021 Mar 11.

Centre for Primary Care and Health Services Research, The University of Manchester, Manchester, UK.

Objectives: Primary care records have traditionally served the needs and demands of clinicians rather than those of the patient. In England, general practices must promote and offer registered patients online access to their primary care record, and research has shown benefits to both patients and clinicians of doing so. Despite this, we know little about patients' needs and expectations regarding online access to their record. This study explored what patients and carers want from online access to their electronic primary care health record, their experiences of using it, how they would like to interact with their record and what support they may need.

Design: Focus groups and semistructured interviews using purposive sampling to achieve a good sociodemographic spread. Interviews were digitally audiorecorded, transcribed and coded using an established thematic approach.

Setting: Focus groups and interviews were conducted in community settings in the UK.

Participants: Fifty-four individuals who were either eligible for the National Health Service Health Check, living with more than one long-term condition or caring for someone else.

Results: Participants views regarding online access were categorised into four main themes: awareness, capabilities, consequences and inevitability. Participants felt online access should be better promoted, and suggested a number of additional functions, such as better integration with other parts of the healthcare system. It was felt that online access could improve quality of care (eg, through increased transparency) but also have potential negative consequences (eg, by replacing face to face contact). A move towards more online records access was considered inevitable, but participants noted a need for additional support and training in using the online record, especially to ensure that health inequalities are not exacerbated.

Conclusions: Discussions with patients and carers about their views of accessing online records have provided useful insights into future directions and potential improvements for this service.
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http://dx.doi.org/10.1136/bmjopen-2020-044221DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7957122PMC
March 2021

Public Perspectives of Using Social Media Data to Improve Adverse Drug Reaction Reporting: A Mixed-Methods Study.

Drug Saf 2021 May 13;44(5):553-564. Epub 2021 Feb 13.

Division of Musculoskeletal and Dermatological Sciences, Centre for Epidemiology Versus Arthritis, The University of Manchester, Oxford Road, Manchester, M13 9PL, UK.

Introduction: Information on suspected adverse drug reactions (ADRs) voluntarily submitted by patients can be a valuable source of information for improving drug safety; however, public awareness of reporting mechanisms remains low. Whilst methods to automatically detect ADR mentions from social media posts using text mining techniques have been proposed to improve reporting rates, it is unclear how acceptable these would be to social media users.

Objective: The objective of this study was to explore public opinion about using automated methods to detect and report mentions of ADRs on social media to enhance pharmacovigilance efforts.

Methods: Users of the online health discussion forum HealthUnlocked participated in an online survey (N = 1359) about experiences with ADRs, knowledge of pharmacovigilance methods, and opinions about using automated data mining methods to detect and report ADRs. To further explore responses, five qualitative focus groups were conducted with 20 social media users with long-term health conditions.

Results: Participant responses indicated a low awareness of pharmacovigilance methods and ADR reporting. They showed a strong willingness to share health-related social media data about ADRs with researchers and regulators, but were cautious about automated text mining methods of detecting and reporting ADRs.

Conclusions: Social media users value public-facing pharmacovigilance schemes, even if they do not understand the current framework of pharmacovigilance within the UK. Ongoing engagement with users is essential to understand views, share knowledge and respect users' privacy expectations to optimise future ADR reporting from online health communities.
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http://dx.doi.org/10.1007/s40264-021-01042-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8053157PMC
May 2021

Protocol for a non-randomised feasibility study evaluating a codesigned patient safety guide in primary care.

BMJ Open 2021 01 20;11(1):e039752. Epub 2021 Jan 20.

NIHR Greater Manchester Patient Safety Translational Research Centre, The University of Manchester, Manchester, UK.

Introduction: Patients and carers should be active partners in patient safety with healthcare professionals and be empowered to use personalised approaches to identify safety concerns and work together to prevent them. This protocol paper details a study to examine the feasibility of a multicomponent intervention to involve patients and/or carers in patient safety in primary care in the UK.

Methods And Analysis: This is a two-phase, non-randomised feasibility mixed methods pragmatic study of a patient safety guide for primary care (PSG-PC). 8 general practices will recruit 120 patient and/or carer participants. All patient and/or carer participants will receive the PSG-PC. It will examine the feasibility and acceptability of the PSG-PC in primary care settings in patients aged 18 years or older who attend appointments at general practice with health professionals four or more times per year as either patients or carers. It will identify secondary outcomes for improving patient safety, health status and patient empowerment, and reducing health service utilisation over 6 months between baseline and 6-month follow-ups. The findings will inform whether a main effectiveness trial is feasible and, if so, how it should be designed, and how many patients and practices will be needed. The study will be undertaken between January 2020 and September 2021.

Ethics And Dissemination: Ethical approval was obtained from the National Health Service London-West London and Gene Therapy Advisory Committee Research Ethics Committee (reference: 19/LO/1289). Research findings will be disseminated with participating general practices and shared in a range of different ways to engage different audiences, including presenting at international and national conferences, publishing in open-access, peer-reviewed journals and facilitating dissemination workshops within local communities with patients, carers and healthcare professionals.

Trial Registration Number: ISRCTN90222092.
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http://dx.doi.org/10.1136/bmjopen-2020-039752DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7818830PMC
January 2021

Exploring the experiences of changes to support access to primary health care services and the impact on the quality and safety of care for homeless people during the COVID-19 pandemic: a study protocol for a qualitative mixed methods approach.

Int J Equity Health 2021 01 10;20(1):29. Epub 2021 Jan 10.

NIHR Greater Manchester Patient Safety Translational Research Centre, 6th Floor Williamson Building, Oxford Road, Manchester, M13 9PL, Centre for Primary Care, The University of Manchester, Manchester, UK.

Background: Despite high level of health care need amongst people experiencing homelessness, poor access is a major concern. This is sometimes due to organisational and bureaucratic barriers, but also because they often feel stigmatised and treated badly when they do seek health care. The COVID-19 pandemic and the required social distancing measures have caused unprecedented disruption and change for the organisation of primary care, particularly for people experiencing homelessness. Against this backdrop there are many questions to address regarding whether the recent changes required to deliver services to people experiencing homelessness in the context of COVID-19 will help to address or compound problems in accessing care and inequalities in health outcomes.

Methods: An action led and participatory research methodology will be employed to address the study objectives. Interviews with people experiencing homelessness were will be conducted by a researcher with lived experience of homelessness. Researchers with lived experience are able to engage with vulnerable communities in an empathetic, non-judgemental way as their shared experience promotes a sense of trust and integrity, which in turn encourages participation in research and may help people speak more openly about their experience. The experiences of health professionals and stakeholders delivering and facilitating care for people experiencing homelessness during the pandemic will also be explored.

Discussion: It is important to explore whether recent changes to the delivery of primary care in response to the COVID-19 pandemic compromise the safety of people experiencing homelessness and exacerbate health inequalities. This could have implications for how primary healthcare is delivered to those experiencing homelessness not only for the duration of the pandemic but in the future.
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http://dx.doi.org/10.1186/s12939-020-01364-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7797179PMC
January 2021

Implementing disruptive technological change in UK healthcare: exploring development of a smart phone app for remote patient monitoring as a boundary object using qualitative methods.

J Health Organ Manag 2020 Dec;ahead-of-print(ahead-of-print)

National Institute for Health Research School for Primary Care Research, The University of Manchester, Manchester, UK.

Purpose: Developing technological innovations in healthcare is made complex and difficult due to effects upon the practices of professional, managerial and other stakeholders. Drawing upon the concept of boundary object, this paper explores the challenges of achieving effective collaboration in the development and use of a novel healthcare innovation in the English healthcare system.

Design/methodology/approach: A case study is presented of the development and implementation of a smart phone application (app) for use by rheumatoid arthritis patients. Over a two-year period (2015-2017), qualitative data from recorded clinical consultations ( = 17), semi-structured interviews ( = 63) and two focus groups ( = 13) were obtained from participants involved in the app's development and use (clinicians, patients, researchers, practitioners, IT specialists and managers).

Findings: The case focuses on the use of the app and its outputs as a system of inter-connected boundary objects. The analysis highlights the challenges overcome in the innovation's development and how knowledge sharing between patients and clinicians was enhanced, altering the nature of the clinical consultation. It also shows how conditions surrounding the innovation both enabled its development and inhibited its wider scale-up.

Originality/value: By recognizing that technological artefacts can simultaneously enable and inhibit collaboration, this paper highlights the need to overcome tensions between the transformative capability of such healthcare innovations and the inhibiting effects simultaneously created on change at a wider system level.
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http://dx.doi.org/10.1108/JHOM-07-2020-0295DOI Listing
December 2020

Smartphone-Enhanced Symptom Management In Psychosis: Open, Randomized Controlled Trial.

J Med Internet Res 2020 08 13;22(8):e17019. Epub 2020 Aug 13.

Institute of Psychiatry, Psychology and Neurosciences, King's College London, London, United Kingdom.

Background: Improving recovery from acute symptoms and preventing relapse are two significant challenges in severe mental illness. We developed a personalized smartphone-based app to monitor symptoms in real time and validated its acceptance, reliability, and validity.

Objective: To assess (i) acceptability of continuous monitoring to SMI patients and health professionals over 3 months; (ii) impact of active self-monitoring on positive psychotic symptoms assessed at 6 and 12 weeks; and (iii) the feasibility of detecting early warning signs of relapse.

Methods: The active symptom monitoring smartphone app was built into an end-to-end system in two NHS Trusts to enable real-time symptom self-monitoring and detection by the clinical team of early signs of relapse in people with severe mental illness. We conducted an open randomized controlled trial of active symptom monitoring compared to usual management to assess: (i) acceptability and safety of continuous monitoring over 3 months; (ii) impact of active self-monitoring on positive psychotic symptoms assessed at 6 and 12 weeks; (iii) feasibility of detecting early warning signs of relapse communicated to the healthcare staff via an app streaming data to the electronic health record. Eligible participants with a Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) diagnosis of schizophrenia and related disorders, and a history of relapse within the previous two years were enrolled from an early intervention team and a community mental health team.

Results: Of 181 eligible patients, 81 (45%) consented and were randomized to either active symptom monitoring or management as usual. At 12 weeks, 90% (33/36) of those in the active monitoring group continued to use the system and exhibited an adherence rate (defined as responding to >33% of alerts) of 84% (30/36}. Active symptom monitoring was associated with no difference on the empowerment scale in comparison to the usual management group at 12 weeks. The pre-planned intent-to-treat analysis of the primary outcome, a positive score on the Positive and Negative Syndrome Scale (PANSS) scale, showed a significant reduction in the active symptom monitoring group over 12 weeks in the early intervention center. Alerts for personalized early warning signs of relapse were built into the workflows of both NHS Trusts, and 100% of health professional staff used the system in a new digital workflow. Qualitative analyses supported the acceptability of the system to participants and staff.

Conclusions: The active smartphone monitoring system is feasible and was accepted by users in a 3-month study of people with severe mental illness, with surprisingly high levels of adherence. App use was associated with psychotic symptom improvement in recent-onset participants, but not those with longstanding illness, supporting the notion of improved self-management. When built into clinical management workflows to enable personalized alerts of symptom deterioration, the app has demonstrated utility in promoting earlier intervention for relapse.

Trial Registration: ISRCTN Registry ISRCTN88145142; http://www.isrctn.com/ISRCTN88145142.
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http://dx.doi.org/10.2196/17019DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7453320PMC
August 2020

What do patients want? A qualitative exploration of patients' needs and expectations regarding online access to their primary care record.

Br J Gen Pract 2020 Jun;70(suppl 1)

The University of Manchester.

Background: Primary care records have traditionally served the needs and demands of clinicians rather than those of the patient. GP contracts in England state practices must promote and offer registered patients online access to their primary care record and research has shown benefits to both patients and clinicians of doing so. Despite this, we know little about patients' needs and expectations regarding online access.

Aim: To explore patients' views about accessing online primary care records and to find out how patients would like to interact with their records and what support they may need.

Method: Interviews and focus groups with a sample of 50 patients from a variety of socio-demographic backgrounds who were either; eligible for the NHS Health Check; had multimorbidities or were carers. Thematic analysis of data identified major themes impacting upon patients' wishes and needs as well as highlighting population-specific issues.

Results: Participants highlighted a wide range of views about the benefits and drawbacks of accessing their records online. The majority of participants indicated that they would be more likely to access their online primary care record if improvements were made to the design, reliability and functionality of existing online record services. Carers found accessing online records particularly useful.

Conclusion: Consultation with patients and carers about their experiences of accessing online records; support needs and preferred functions can provide useful insights to inform the future design of online record services.
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http://dx.doi.org/10.3399/bjgp20X711245DOI Listing
June 2020

Implementing a digital patient feedback system: an analysis using normalisation process theory.

BMC Health Serv Res 2020 May 7;20(1):387. Epub 2020 May 7.

NIHR School for Primary Care Research, University of Manchester, Manchester, UK.

Background: Patient feedback in the English NHS is now widespread and digital methods are increasingly used. Adoption of digital methods depends on socio-technical and contextual factors, alongside human agency and lived experience. Moreover, the introduction of these methods may be perceived as disruptive of organisational and clinical routines. The focus of this paper is on the implementation of a particular digital feedback intervention that was co-designed with health professionals and patients (the DEPEND study).

Methods: The digital feedback intervention was conceptualised as a complex intervention and thus the study focused on the contexts within which it operated, and how the different participants made sense of the intervention and engaged with it (or not). Four health care sites were studied: an acute setting, a mental health setting, and two general practices. Qualitative data was collected through interviews and focus groups with professionals, patients and carers. In total 51 staff, 24 patients and 8 carers were included. Forty-two observations of the use of the digital feedback system were carried out in the four settings. Data analysis was based on modified grounded theory and Normalisation Process Theory (NPT) formed the conceptual framework.

Results: Digital feedback made sense to health care staff as it was seen as attractive, fast to complete and easier to analyse. Patients had a range of views depending on their familiarity with the digital world. Patients mentioned barriers such as kiosk not being visible, privacy, lack of digital know-how, technical hitches with the touchscreen. Collective action in maintaining participation again differed between sites because of workload pressure, perceptions of roles and responsibilities; and in the mental health site major organisational change was taking place. For mental health service users, their relationship with staff and their own health status determined their digital use.

Conclusion: The potential of digital feedback was recognised but implementation should take local contexts, different patient groups and organisational leadership into account. Patient involvement in change and adaptation of the intervention was important in enhancing the embedding of digital methods in routine feedback. NPT allowed for a in-depth understanding of actions and interactions of both staff and patients.
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http://dx.doi.org/10.1186/s12913-020-05234-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7203816PMC
May 2020

Primary Care Providers Involvement in Caring for Young Adults with Complex Chronic Conditions Exiting Pediatric Care: An Integrative Literature Review.

Compr Child Adolesc Nurs 2020 Mar 19:1-22. Epub 2020 Mar 19.

School of Nursing, University of Northern British Columbia, Prince George, British Columbia, Canada.

The transition to adulthood is a critical time for everyone to build independence, experience new things, and become self-sufficient. With medical advances, individuals with complex chronic conditions are surviving into adulthood. As such they withstand additional challenges during this stage of their life including; facing a discontinuity of care, loss of prior health-care networks and champions, and a shift toward increased responsibility and self-management of their conditions. Often this shift results in the need for primary care providers to act as care managers, coordinating care and supporting the young adult as they navigate adulthood. In exploring the role of primary care providers with this population we reviewed the literature to identify what strategies primary care providers can use to enhance the transition process for young adults ages 15 to 25 years with complex chronic conditions exiting pediatric services. An integrative literature review approach was used to systematically search the contemporary literature. Applying inclusion criteria and quality assessment of relevant research and gray literature we identified 12 studies that warranted detailed review and analysis. Analysis of the studies highlighted four key themes: relationships, fear and anxiety, preparedness, and communication and collaboration. It was evident that health-care transition for young adults with complex chronic conditions was complicated by their psychosocial development and extensive health and service needs. Health-care transition is a team effort influenced by local contexts, resources, and relational practices. Both groups of primary care providers and young adults must be prepared prior to transition if they are to become immersed and engaged in this work. The population of young adults with complex chronic conditions exiting pediatric care will continue to grow as access to care delivery and medical technology continue to expand. While health-care transition for this population is complicated by extensive needs and psychosocial development, primary care providers can act as key supports in employing strategies to enhance the transition process for these young adults.
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http://dx.doi.org/10.1080/24694193.2020.1733707DOI Listing
March 2020

Patient safety in marginalised groups: a narrative scoping review.

Int J Equity Health 2020 02 12;19(1):26. Epub 2020 Feb 12.

NIHR Greater Manchester Patient Safety Translational Research Centre, The University of Manchester, Williamson Building, Oxford Rd, Manchester, M13 9PL,, England.

Background: Marginalised groups ('populations outside of mainstream society') experience severe health inequities, as well as increased risk of experiencing patient safety incidents. To date however no review exists to identify, map and analyse the literature in this area in order to understand 1) which marginalised groups have been studied in terms of patient safety research, 2) what the particular patient safety issues are for such groups and 3) what contributes to or is associated with these safety issues arising.

Methods: Scoping review. Systematic searches were performed across six electronic databases in September 2019. The time frame for searches of the respective databases was from the year 2000 until present day.

Results: The searches yielded 3346 articles, and 67 articles were included. Patient safety issues were identified for fourteen different marginalised patient groups across all studies, with 69% (n = 46) of the studies focused on four patient groups: ethnic minority groups, frail elderly populations, care home residents and low socio-economic status. Twelve separate patient safety issues were classified. Just over half of the studies focused on three issues represented in the patient safety literature, and in order of frequency were: medication safety, adverse outcomes and near misses. In total, 157 individual contributing or associated factors were identified and mapped to one of seven different factor types from the Framework of Contributory Factors Influencing Clinical Practice within the London Protocol. Patient safety issues were mostly multifactorial in origin including patient factors, health provider factors and health care system factors.

Conclusions: This review highlights that marginalised patient groups are vulnerable to experiencing a variety patient safety issues and points to a number of gaps. The findings indicate the need for further research to understand the intersectional nature of marginalisation and the multi-dimensional nature of patient safety issues, for groups that have been under-researched, including those with mental health problems, communication and cognitive impairments. Such understanding provides a basis for working collaboratively to co-design training, services and/or interventions designed to remove or at the very least minimise these increased risks.

Trial Registration: Not applicable for a scoping review.
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http://dx.doi.org/10.1186/s12939-019-1103-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7014732PMC
February 2020

Engagement and Participant Experiences With Consumer Smartwatches for Health Research: Longitudinal, Observational Feasibility Study.

JMIR Mhealth Uhealth 2020 01 29;8(1):e14368. Epub 2020 Jan 29.

Centre for Epidemiology Versus Arthritis, Centre for Musculoskeletal Research, University of Manchester, Manchester Academic Health Science Centre, Manchester, United Kingdom.

Background: Wearables provide opportunities for frequent health data collection and symptom monitoring. The feasibility of using consumer cellular smartwatches to provide information both on symptoms and contemporary sensor data has not yet been investigated.

Objective: This study aimed to investigate the feasibility and acceptability of using cellular smartwatches to capture multiple patient-reported outcomes per day alongside continuous physical activity data over a 3-month period in people living with knee osteoarthritis (OA).

Methods: For the KOALAP (Knee OsteoArthritis: Linking Activity and Pain) study, a novel cellular smartwatch app for health data collection was developed. Participants (age ≥50 years; self-diagnosed knee OA) received a smartwatch (Huawei Watch 2) with the KOALAP app. When worn, the watch collected sensor data and prompted participants to self-report outcomes multiple times per day. Participants were invited for a baseline and follow-up interview to discuss their motivations and experiences. Engagement with the watch was measured using daily watch wear time and the percentage completion of watch questions. Interview transcripts were analyzed using grounded thematic analysis.

Results: A total of 26 people participated in the study. Good use and engagement were observed over 3 months: most participants wore the watch on 75% (68/90) of days or more, for a median of 11 hours. The number of active participants declined over the study duration, especially in the final week. Among participants who remained active, neither watch time nor question completion percentage declined over time. Participants were mainly motivated to learn about their symptoms and enjoyed the self-tracking aspects of the watch. Barriers to full engagement were battery life limitations, technical problems, and unfulfilled expectations of the watch. Participants reported that they would have liked to report symptoms more than 4 or 5 times per day.

Conclusions: This study shows that capture of patient-reported outcomes multiple times per day with linked sensor data from a smartwatch is feasible over at least a 3-month period.

International Registered Report Identifier (irrid): RR2-10.2196/10238.
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http://dx.doi.org/10.2196/14368DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7016619PMC
January 2020

Exploring engagement with digital screens for collecting patient feedback in clinical waiting rooms: The role of touch and place.

Health (London) 2021 Jul 9;25(4):454-474. Epub 2019 Dec 9.

NIHR School for Primary Care Research, NIHR Greater Manchester Patient Safety Translational Research Centre, Manchester, UK.

Health service settings are increasingly installing digital devices to enable people to engage digitally with multiple processes, including automated 'check-in', as well as collecting feedback on experiences of care. In addition, policy is increasingly driving digital agendas to promote patient engagement with online services, management of health records and routine monitoring. While this tendency towards widespread digital diffusion has been viewed as a means of enabling greater empowerment of patients and improved responsiveness of services to 'patient voice', social scientists have provided critical insights on the use of digital technologies in practice. However, there remains limited understanding of the mechanisms and contexts for digital engagement. In particular, there is a need for further research on the sensory and spatial aspects of engagement that are integral to everyday use (or non-use) of technology in practice. This article reports new insights from detailed qualitative case studies utilising in-depth interviews with patients, carers and staff, in addition to ethnographic observations of different digital modalities and their usage in specific health care contexts. A sociomaterial approach and concepts of affective atmosphere and technogeography are drawn upon to analyse the role of touch and place in the collection of digital feedback in multiple waiting room settings for people with physical and mental health long-term conditions. The findings highlight how barriers to engagement varied by context such as particular concerns about privacy for those with mental health problems and physical and sensory barriers for those with physical impairments. The findings demonstrate how digital inequalities can play out in practice and have implications for the design and development of digital innovations and tackling inequalities that may be associated with implementation of new digital technologies in healthcare.
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http://dx.doi.org/10.1177/1363459319889097DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8276334PMC
July 2021

How the weather affects the pain of citizen scientists using a smartphone app.

NPJ Digit Med 2019 24;2:105. Epub 2019 Oct 24.

1Centre for Epidemiology Versus Arthritis, Manchester Academic Health Science Centre, The University of Manchester, Manchester, UK.

Patients with chronic pain commonly believe their pain is related to the weather. Scientific evidence to support their beliefs is inconclusive, in part due to difficulties in getting a large dataset of patients frequently recording their pain symptoms during a variety of weather conditions. Smartphones allow the opportunity to collect data to overcome these difficulties. Our study analysed daily data from 2658 patients collected over a 15-month period. The analysis demonstrated significant yet modest relationships between pain and relative humidity, pressure and wind speed, with correlations remaining even when accounting for mood and physical activity. This research highlights how citizen-science experiments can collect large datasets on real-world populations to address long-standing health questions. These results will act as a starting point for a future system for patients to better manage their health through pain forecasts.
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http://dx.doi.org/10.1038/s41746-019-0180-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6811599PMC
October 2019

Conservative interventions for treating functional daytime urinary incontinence in children.

Cochrane Database Syst Rev 2019 09 18;9:CD012367. Epub 2019 Sep 18.

Department of Surgery, University of the Philippines, Manila, Philippines.

Background: In children, functional daytime urinary incontinence is the term used to describe any leakage of urine while awake that is not the result of a known underlying neurological or congenital anatomic cause (such as conditions or injuries that affect the nerves that control the bladder or problems with the way the urinary system is formed). It can result in practical difficulties for both the child and their family and can have detrimental effects on a child's well-being, education and social engagement.

Objectives: To assess the effects of conservative interventions for treating functional daytime urinary incontinence in children.

Search Methods: We searched the Cochrane Incontinence Specialised Register, which contains studies identified from CENTRAL, MEDLINE, MEDLINE In-Process, MEDLINE Epub Ahead of Print, CINAHL, ClinicalTrials.gov, WHO ICTRP and handsearching of journals and conference proceedings (searched 11 September 2018). We also searched Chinese language bibliographic databases: Chinese Biomedical Literature Database (CBM), China National Knowledge Infrastructure (CNKI), and Wanfang. No language restrictions were imposed.

Selection Criteria: We included randomised controlled trials (RCTs), quasi-randomised, multi-arm studies, cross-over studies and cluster-randomised studies that included children aged between 5 and 18 years with functional daytime urinary incontinence.

Data Collection And Analysis: Two review authors independently screened records and determined the eligibility of studies for inclusion according to predefined criteria. Where data from the study were not provided, we contacted the study authors to request further information. Two review authors assessed risk of bias and processed included study data as described in the Cochrane Handbook for Systematic Reviews of Interventions. Where meta-analysis was possible, we applied random-effects meta-analysis using the Mantel-Haenszel method for dichotomous outcomes.

Main Results: The review included 27 RCTs involving 1803 children. Of these, six were multi-arm and one was also a cross-over study. Most studies were small, with numbers randomised ranging from 16 to 202. A total of 19 studies were at high risk of bias for at least one domain. Few studies reported data suitable for pooling due to heterogeneity in interventions, outcomes and measurements.Individual conservative interventions (lifestyle, behavioural or physical) versus no treatmentTranscutaneous electrical nerve stimulation (TENS) versus sham (placebo) TENS. More children receiving active TENS may achieve continence (risk ratio (RR) 4.89, 95% confidence interval (CI) 1.68 to 14.21; 3 studies; n = 93; low-certainty evidence).One individual conservative intervention versus another individual or combined conservative interventionPelvic floor muscle training (PFMT) with urotherapy versus urotherapy alone. We are uncertain whether more children receiving PFMT with urotherapy achieve continence (RR 2.36, 95% CI 0.65 to 8.53, 95% CI 25 to 100; 3 studies; n = 91; very low-certainty evidence).Voiding education with uroflowmetry feedback and urotherapy versus urotherapy alone. Slightly more children receiving voiding education with uroflow feedback and urotherapy may achieve continence (RR 1.13, 95% CI 0.87 to 1.45; 3 studies; n = 151; low-certainty evidence).Urotherapy with timer watch versus urotherapy alone. We are uncertain whether urotherapy plus timer watch increases the number of children achieving continence compared to urotherapy alone (RR 1.42, 95% CI 1.12 to 1.80; 1 study; n = 58; very low-certainty evidence).Combined conservative interventions versus other combined conservative interventionsTENS and standard urotherapy versus PFMT with electromyographic biofeedback and standard urotherapy. We are uncertain whether there is any evidence of a difference between treatment groups in the proportions of children achieving continence (RR 1.11, 95% CI 0.73 to 1.68; 1 study; n = 78; very low-certainty evidence).PFMT with electromyography biofeedback and standard urotherapy versus PFMT without feedback but with standard urotherapy. We are uncertain whether there is any evidence of a difference between treatment groups in the proportions of children achieving continence (RR 1.05, 95% CI 0.72 to 1.52; 1 study; n = 41; very low-certainty evidence).Individual conservative interventions versus non-conservative interventions (pharmacological or invasive, combined or not with any conservative interventions)PFMT versus anticholinergics. We are uncertain whether more children receiving PFMT than anticholinergics achieve continence (RR 1.92, 95% CI 1.17 to 3.15; equivalent to an increase from 33 to 64 per 100 children; 2 studies; n = 86; very low-certainty evidence).TENS versus anticholinergics. We are uncertain whether there was any evidence of a difference between treatment groups in the proportions of children achieving continence (RR 0.81, 95% CI 0.05 to 12.50; 2 studies; n = 72; very low-certainty evidence).Combined conservative interventions versus non-conservative interventions (pharmacological or invasive, combined or not with any conservative interventions)Voiding education with uroflowmetry feedback versus anticholinergics. We are uncertain whether there was any evidence of a difference between treatment groups in the proportion of children achieving continence (RR 1.02, 95% CI 0.58 to 1.78; 1 study; n = 64; very low-certainty evidence).

Authors' Conclusions: The review found little reliable evidence that can help affected children, their carers and the clinicians working with them to make evidence-based treatment decisions. In this scenario, the clinical experience of individual clinicians and the support of carers may be the most valuable resources. More well-designed research, with well-defined interventions and consistent outcome measurement, is needed.
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http://dx.doi.org/10.1002/14651858.CD012367.pub2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6749940PMC
September 2019

Canadian Pediatric Populations and Specific Challenges.

Compr Child Adolesc Nurs 2019 Sep 7;42(3):167-171. Epub 2019 Aug 7.

Pediatric Nurse Clinician, Nanaimo Regional General Hospital , Nanaimo , British Columbia , Canada.

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http://dx.doi.org/10.1080/24694193.2019.1650599DOI Listing
September 2019

Providing 'the bigger picture': benefits and feasibility of integrating remote monitoring from smartphones into the electronic health record.

Rheumatology (Oxford) 2020 02;59(2):367-378

National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care, Greater Manchester, Salford Royal NHS Foundation Trust, Salford.

Objectives: To establish the acceptability and feasibility of collecting daily patient-generated health data (PGHD) using smartphones and integrating PGHD into the electronic health record, using the example of RA.

Methods: The Remote Monitoring of RA smartphone app was co-designed with patients, clinicians and researchers using qualitative semi-structured interviews and focus groups, including selection of question sets for symptoms and disease impact. PGHD were integrated into the electronic health record of one hospital and available in graphical form during consultations. Acceptability and feasibility were assessed with 20 RA patients and two clinicians over 3 months. A qualitative evaluation included semi-structured interviews with patients and clinicians before and after using the app, and audio-recordings of consultations to explore impact on the consultation. PGHD completeness was summarized descriptively, and qualitative data were analysed thematically.

Results: Patients submitted data on a median of 91% days over 3 months. Qualitative analysis generated three themes: RA as an invisible disease; providing the bigger picture of RA; and enabling person-centred consultations. The themes demonstrated that the system helped render patients' RA more visible by providing the 'bigger picture', identifying real-time changes in disease activity and capturing symptoms that would otherwise have been missed. Graphical summaries during consultations enabled a more person-centred approach whereby patients felt better able to participate in consultations and treatment plans.

Conclusion: Remote Monitoring of RA has uniquely integrated daily PGHD from smartphones into the electronic health record. It has delivered proof-of-concept that such integrated remote monitoring systems are feasible and can transform consultations for clinician and patient benefit.
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http://dx.doi.org/10.1093/rheumatology/kez207DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7223265PMC
February 2020

Understanding the diagnosis of pre-diabetes in patients aged over 85 in English primary care: a qualitative study.

BMC Fam Pract 2019 06 29;20(1):90. Epub 2019 Jun 29.

NIHR School for Primary Care Research, Centre for Primary Care and Health Services Research, School of Health Science, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK.

Background: The benefit of a "diagnosis" of pre-diabetes in very elderly patients is debated. How clinicians manage pre-diabetic blood results in these patients is unknown. This study aims to understand how clinicians are "diagnosing" older patients with pre-diabetic blood parameters.

Methods: Semi-structured interviews and focus groups with health care staff (24 total participants) were conducted in the north of England. Interviews and focus groups were recorded, transcribed and analysed thematically. A grounded theory approach was taken with the theory of candidacy being used as a sensitising concept through which questions were framed and results interpreted.

Results: There is a complex system of competing pressures that influence a clinician in deciding whether, and in what way, to inform a very elderly patient that they have pre-diabetes. The majority of clinicians adjust their management of pre-diabetes to the age and perceived risk/benefit for the patient. Whilst some clinicians choose not to inform certain patients of their blood results, many clinicians maintain, what could be seen as a somewhat paradoxical approach of labeling all older patients with pre-diabetes but downplaying the significance to the patient. The policy, organisational context, workload and professional constraints under which clinicians work, play a significant role in shaping how they deal with pre-diabetic blood results in the very elderly.

Conclusion: There has been recent acknowledgement of how policy and organisational context frames decision-making, but there is a lack of evidence on how this influences uncertainty and dilemmas in decision-making in practice. These findings add further weight for the argument that treatment burden should be included in clinical guidelines.
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http://dx.doi.org/10.1186/s12875-019-0981-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6599359PMC
June 2019

Reasons for Underreporting of Uremic Pruritus in People With Chronic Kidney Disease: A Qualitative Study.

J Pain Symptom Manage 2019 10 19;58(4):578-586.e2. Epub 2019 Jun 19.

Centre for Health Informatics, Division of Informatics, Imaging and Data Sciences, Faculty of Biology, Medicine and Health, Manchester Academic Health Science Centre, The University of Manchester, Manchester, UK. Electronic address:

Context: Uremic pruritus, or itch, is common in people with chronic kidney disease (CKD) and has a negative impact on their lives and well-being. However, for reasons currently unknown, itch often remains unreported and therefore untreated.

Objectives: To explore reasons for underreporting of itch to provide pointers for improving itch reporting and management in people with CKD.

Methods: We interviewed adult patients with CKD who self-reported experiencing itching in the last three years (n = 25), nephrologists (n = 10), and nurses (n = 12) from three kidney services in the U.K. Topic guides were informed by previous studies and a theoretical model of self-regulation. We conducted a thematic analysis of verbatim transcripts using framework analysis.

Results: We identified the following three main themes reflecting factors that may influence whether itch is reported: knowledge on causes and treatment of itch (lack of awareness of the relationship between itch and CKD, and lack of knowledge of treatment options); attitudes toward importance of itch as a health issue (patients' and clinicians' attitudes); and prompts for itch assessment during consultations (routine practice, itch as a marker, and itch severity).

Conclusion: Underreporting of itch is related to patients being unaware of its causes, accepting it as something to live with, prioritizing other health issues, and the length and timing of consultations. Health care professionals' assessment and management of itch vary widely and are not necessarily evidence-based. Better patient information, development of clinical practice guidelines, and incorporation of routine symptom assessments into care may improve itch reporting and management in people with CKD.
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http://dx.doi.org/10.1016/j.jpainsymman.2019.06.010DOI Listing
October 2019

Lessons for the future: Reflections on a review of child death overview panels through a local lens in the United Kingdom.

J Child Health Care 2020 06 8;24(2):274-296. Epub 2019 May 8.

Sefton Council, Bootle, England, UK.

Child death overview panels (CDOPs) were set up in the United Kingdom following the confidential enquiry into maternal and child health. Their scope is to identify learning points and modifiable factors that focus on improving services and prevent further deaths. In the light of UK national review and subsequent legislative changes to local safeguarding arrangements, we wanted to share the lessons learnt from our local network study during this time of transition. At times of system change, organizational memory can be eroded, which results in lost opportunities to further strengthen multi-agency working in practice. Overall, our local study highlighted key learning points which could be of use in emergent safeguarding partnerships. Professionals need to continue to actively pursue and create opportunities to collect and collate comprehensive data and promote collaborative multi-agency arrangements. Panels need to be responsive to all partners involved in the safeguarding process, which includes parents. A level of reciprocity needs to be nurtured for safeguarding panel members and acute care providers to work in ways which promote learning, consider emotional support systems and explore ways to define and mobilize knowledge that can inform the safeguarding process and prevent future avoidable child deaths.
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http://dx.doi.org/10.1177/1367493519844101DOI Listing
June 2020

Collecting Symptoms and Sensor Data With Consumer Smartwatches (the Knee OsteoArthritis, Linking Activity and Pain Study): Protocol for a Longitudinal, Observational Feasibility Study.

JMIR Res Protoc 2019 Jan 23;8(1):e10238. Epub 2019 Jan 23.

Arthritis Research United Kingdom Centre for Epidemiology, Centre for Musculoskeletal Research, University of Manchester, Manchester Academic Health Science Centre, Manchester, United Kingdom.

Background: The Knee OsteoArthritis, Linking Activity and Pain (KOALAP) study is the first to test the feasibility of using consumer-grade cellular smartwatches for health care research.

Objective: The overall aim was to investigate the feasibility of using consumer-grade cellular smartwatches as a novel tool to capture data on pain (multiple times a day) and physical activity (continuously) in patients with knee osteoarthritis. Additionally, KOALAP aimed to investigate smartwatch sensor data quality and assess whether engagement, acceptability, and user experience are sufficient for future large-scale observational and interventional studies.

Methods: A total of 26 participants with self-diagnosed knee osteoarthritis were recruited in September 2017. All participants were aged 50 years or over and either lived in or were willing to travel to the Greater Manchester area. Participants received a smartwatch (Huawei Watch 2) with a bespoke app that collected patient-reported outcomes via questionnaires and continuous watch sensor data. All data were collected daily for 90 days. Additional data were collected through interviews (at baseline and follow-up) and baseline and end-of-study questionnaires. This study underwent full review by the University of Manchester Research Ethics Committee (#0165) and University Information Governance (#IGRR000060). For qualitative data analysis, a system-level security policy was developed in collaboration with the University Information Governance Office. Additionally, the project underwent an internal review process at Google, including separate reviews of accessibility, product engineering, privacy, security, legal, and protection regulation compliance.

Results: Participants were recruited in September 2017. Data collection via the watches was completed in January 2018. Collection of qualitative data through patient interviews is still ongoing. Data analysis will commence when all data are collected; results are expected in 2019.

Conclusions: KOALAP is the first health study to use consumer cellular smartwatches to collect self-reported symptoms alongside sensor data for musculoskeletal disorders. The results of this study will be used to inform the design of future mobile health studies. Results for feasibility and participant motivations will inform future researchers whether or under which conditions cellular smartwatches are a useful tool to collect patient-reported outcomes alongside passively measured patient behavior. The exploration of associations between self-reported symptoms at different moments will contribute to our understanding of whether it may be valuable to collect symptom data more frequently. Sensor data-quality measurements will indicate whether cellular smartwatch usage is feasible for obtaining sensor data. Methods for data-quality assessment and data-processing methods may be reusable, although generalizability to other clinical areas should be further investigated.

International Registered Report Identifier (irrid): DERR1-10.2196/10238.
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http://dx.doi.org/10.2196/10238DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6366393PMC
January 2019

A core outcome set for clinical trials of chemoradiotherapy interventions for anal cancer (CORMAC): a patient and health-care professional consensus.

Lancet Gastroenterol Hepatol 2018 12;3(12):865-873

Division of Cancer Sciences, School of Medical Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK; Manchester Cancer Research Centre and National Institute for Health Research, Manchester Biomedical Research Centre, University of Manchester, Manchester, UK; Colorectal and Peritoneal Oncology Centre, Christie National Health Service Foundation Trust, Manchester, UK.

Chemoradiotherapy is the primary treatment for patients with squamous cell carcinoma of the anus, but variations in the reported outcomes have restricted between-study comparisons. Treatment-related morbidity is considerable; however, no trial has comprehensively quantified long-term side-effects or quality of life. Therefore, we established the first international health-care professional and patient consensus to develop a core outcome set, using the Core Outcome Measures in Effectiveness Trials method. We used the results from our previous systematic review and combined them in this Review with patient interviews to derive a comprehensive list of outcomes, followed by a two-round Delphi survey completed by 149 participants (55 patients and 94 health-care professionals) from 11 countries. The Delphi results were discussed at a consensus meeting of health-care professionals and patients. Agreement was reached on 19 outcomes across four domains: disease activity, survival, toxicity, and life impact. Implementation of the Core Outcome Research Measures in Anal Cancer (CORMAC) set in future trials will serve as a framework to achieve standardisation, facilitate selection of health-area-specific evaluation tools, reduce redundancy of outcome lists, allow between-study comparisons, and ultimately enhance the relevance of trial findings to health-care professionals, trialists, and patients.
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http://dx.doi.org/10.1016/S2468-1253(18)30264-4DOI Listing
December 2018

Symptom screening for constipation in oncology: getting to the bottom of the matter.

Support Care Cancer 2019 Jul 30;27(7):2463-2470. Epub 2018 Oct 30.

Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 16th Floor, Room 749, 610 University Avenue, Toronto, ON, M5G 2M9, Canada.

Purpose: This study seeks to determine whether specific screening for constipation will increase the frequency of clinician response within the context of an established symptom screening program.

Methods: A "constipation" item was added to routine Edmonton Symptom Assessment System (ESAS) screening in gynecologic oncology clinics during a 7-week trial period, without additional constipation-specific training. Chart audits were then conducted to determine documentation of assessment and intervention for constipation in three groups of patients, those who completed (1) ESAS (n = 477), (2) ESAS-C with constipation (n = 435), and (3) no ESAS (n = 511).

Results: Among patients who were screened for constipation, 17% reported moderate to severe symptoms. Greater constipation severity increased the likelihood of documented assessment (Z = 2.37, p = .018) and intervention (Z = 1.99, p = .048). Overall rates of documented assessment were 36%, with the highest assessment rate in the no ESAS group (χ = 9.505, p = .006), a group with the highest proportion of late-stage disease. No difference in the rate of assessment was found between the ESAS and ESAS-C groups. Overall rates for documentation of intervention were low, and did not differ between groups.

Conclusions: Specific screening for constipation within an established screening program did not increase the documentation rate for constipation assessment or intervention. The inclusion of specific symptoms in multi-symptom screening initiatives should be carefully evaluated in terms of added value versus patient burden. Care pathways should include guidance on triaging results from multi-symptom screening, and clinicians should pay particular attention to patients who are missed from screening altogether, as they may be the most symptomatic group.
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http://dx.doi.org/10.1007/s00520-018-4520-7DOI Listing
July 2019
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