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1.
Chronic Illn ; 18(4): 742-756, 2022 12.
Article in English | MEDLINE | ID: mdl-33472409

ABSTRACT

OBJECTIVES: Type 1 diabetes can have life-shattering consequences for adolescents and parents. A closed-loop system is a cutting-edge technology which automatically regulates glucose to reduce the burden of diabetes management. We explored adolescents' and parents' experiences of using this technology to understand how it affects their biographies and everyday lives. METHODS: In-depth interviews with 18 adolescents newly diagnosed with type 1 diabetes and 21 parents after ≥12 months experience using closed-loop technology. Data were analysed thematically. RESULTS: Participants reported very few disruptions to their lives when using a closed-loop. Reports of family conflict were minimal as the closed-loop enabled dietary flexibility and glucose levels to be checked effortlessly. Adolescents described doing 'normal' activities without worrying about high/low glucose, and parents reported allowing them to do so unsupervised because the closed-loop would regulate their glucose and keep them safe. Some adolescents expressed concerns about the visibility of components and, to avoid stigma, described curtailing activities such as swimming. Participants described how the closed-loop enabled adolescents to be in control of, or create distance from, diabetes. DISCUSSION: The closed-loop has life-enhancing consequences for both adolescents and parents and helps to reduce the biographical disruption of type 1 diabetes in this age group.


Subject(s)
Diabetes Mellitus, Type 1 , Adolescent , Humans , Diabetes Mellitus, Type 1/therapy , Insulin Infusion Systems , Blood Glucose Self-Monitoring , Blood Glucose/analysis , Parents , Insulin/therapeutic use , Hypoglycemic Agents/therapeutic use
2.
BMC Pediatr ; 21(1): 160, 2021 04 04.
Article in English | MEDLINE | ID: mdl-33814007

ABSTRACT

AIMS: To synthesise the qualitative evidence on parents' experiences of caring for a child aged ≤8 years with type 1 diabetes to identify: the challenges they encounter; their views about support received; ways in which support could be improved; and, directions for future research. METHODS: We searched Medline, EMBASE, CINAHL, PsycINFO and Web of Science databases to identify qualitative studies reporting parents' views and experiences of caring for a child with type 1 diabetes aged ≤8 years. Key analytical themes were identified using thematic synthesis. RESULTS: Fourteen studies were included. The synthesis resulted in the generation of two overarching themes. Monopolisation of life describes the all-encompassing impact diabetes could have on parents due to the constant worry they experienced and the perceived need for vigilance. It describes how parents' caring responsibilities could affect their wellbeing, relationships and finances, and how a lack of trusted sources of childcare and a desire to enable a 'normal' childhood constrained personal choices and activities. However, use of diabetes technologies could lessen some of these burdens. Experiences of professional and informal support describes how encounters with healthcare professionals, while generally perceived as helpful, could lead to frustration and anxiety, and how connecting with other parents caring for a child with type 1 diabetes provided valued emotional and practical support. CONCLUSIONS: This synthesis outlines the challenges parents encounter, their views about support received and ways in which support might be improved. It also highlights significant limitations in the current literature and points to important areas for future research, including how sociodemographic factors and use of newer diabetes technologies influence parents' diabetes management practices and experiences. PROSPERO: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42019128710.


Subject(s)
Diabetes Mellitus, Type 1 , Child , Diabetes Mellitus, Type 1/therapy , Family Relations , Health Personnel , Humans , Parents , Qualitative Research
3.
BMC Med Inform Decis Mak ; 20(1): 98, 2020 06 01.
Article in English | MEDLINE | ID: mdl-32487145

ABSTRACT

BACKGROUND: Treatment decision-making by family members on behalf of patients with major stroke can be challenging because of the shock of the diagnosis and lack of knowledge of the patient's treatment preferences. We aimed to understand how, and why, family members made certain treatment decisions, and explored their information and support needs. METHOD: Semi-structured interviews with family members (n = 24) of patients with major stroke, within 2 weeks of hospital admission. Data were analysed thematically. RESULTS: Families' approach to treatment decision-making lay on a spectrum according to the patient's state of health pre-stroke (i.e. patient's prior experience of illness and functional status) and any views expressed about treatment preferences in the event of life-threatening illness. Support and information needs varied according to where they were on this spectrum. At one extreme, family members described deciding not to initiate life-extending treatments from the outset because of the patients' deteriorating health and preferences expressed pre-stroke. Information from doctors about poor prognosis was merely used to confirm this decision. In the middle of the spectrum were family members of patients who had been moderately independent pre-stroke. They described the initial shock of the diagnosis and how they had initially wanted all treatments to continue. However, once they overcame their shock, and had gathered relevant information, including information about poor prognosis from doctors, they decided that life-extending treatments were no longer appropriate. Many reported this process to be upsetting and expressed a need for psychological support. At the other end of the spectrum were family members of previously independent patients whose preferences pre-stroke had not been known. Family members described feeling extremely distressed at such an unexpected situation and wanting all treatments to continue. They described needing psychological support and hope that the patient would survive. CONCLUSION: The knowledge that family members' treatment decision-making approaches lay on a spectrum depending on the patient's state of health and stated preferences pre-stroke may allow doctors to better prepare for discussions regarding the patient's prognosis. This may enable doctors to provide information and support that is tailored towards family members' needs.


Subject(s)
Decision Making , Stroke , Terminal Care , Adult , Aged , Family , Female , Hospitalization , Humans , Male , Middle Aged , Qualitative Research , Stroke/diagnosis , Stroke/therapy
4.
Diabet Med ; 37(6): 1030-1037, 2020 06.
Article in English | MEDLINE | ID: mdl-31989684

ABSTRACT

AIM: To explore health professionals' views about who would benefit from using a closed-loop system and who should be prioritized for access to the technology in routine clinical care. METHODS: Health professionals (n = 22) delivering the Closed Loop from Onset in type 1 Diabetes (CLOuD) trial were interviewed after they had ≥ 6 months' experience supporting participants using a closed-loop system. Data were analysed thematically. RESULTS: Interviewees described holding strong assumptions about the types of people who would use the technology effectively prior to the trial. Interviewees described changing their views as a result of observing individuals engaging with the closed-loop system in ways they had not anticipated. This included educated, technologically competent individuals who over-interacted with the system in ways which could compromise glycaemic control. Other individuals, who health professionals assumed would struggle to understand and use the technology, were reported to have benefitted from it because they stood back and allowed the system to operate without interference. Interviewees concluded that individual, family and psychological attributes cannot be used as pre-selection criteria and, ideally, all individuals should be given the chance to try the technology. However, it was recognized that clinical guidelines will be needed to inform difficult decisions about treatment allocation (and withdrawal), with young children and infants being considered priority groups. CONCLUSIONS: To ensure fair and equitable access to closed-loop systems, prejudicial assumptions held by health professionals may need to be addressed. To support their decision-making, clinical guidelines need to be made available in a timely manner.


Subject(s)
Attitude of Health Personnel , Diabetes Mellitus, Type 1/drug therapy , Hypoglycemic Agents/administration & dosage , Insulin/administration & dosage , Nurses , Patient Selection , Physicians , Blood Glucose Self-Monitoring , Health Care Rationing , Humans , Infusion Pumps, Implantable , Insulin Infusion Systems , Monitoring, Ambulatory , Qualitative Research , Randomized Controlled Trials as Topic
5.
Mol Ther Oncolytics ; 14: 246-252, 2019 Sep 27.
Article in English | MEDLINE | ID: mdl-31428674

ABSTRACT

Vaccinia virus (VACV) possesses a great safety record as a smallpox vaccine and has been intensively used as an oncolytic virus against various types of cancer over the past decade. Different strategies were developed to make VACV safe and selective to cancer cells. Leading clinical candidates, such as Pexa-Vec, are attenuated through deletion of the viral thymidine kinase (TK) gene, which limits virus growth to replicate in cancer tissue. However, tumors are not the only tissues whose metabolic activity can overcome the lack of viral TK. In this study, we sought to further increase the tumor-specific replication and oncolytic potential of Copenhagen strain VACV ΔTK. We show that deletion of the anti-apoptosis viral gene F1L not only increases the safety of the Copenhagen ΔTK virus but also improves its oncolytic activity in an aggressive glioblastoma model. The additional loss of F1L does not affect VACV replication capacity, yet its ability to induce cancer cell death is significantly increased. Our results also indicate that cell death induced by the Copenhagen ΔTK/F1L mutant releases more immunogenic signals, as indicated by increased levels of IL-1ß production. A cytotoxicity screen in an NCI-60 panel shows that the ΔTK/F1L virus induces faster tumor cell death in different cancer types. Most importantly, we show that, compared to the TK-deleted virus, the ΔTK/F1L virus is attenuated in human normal cells and causes fewer pox lesions in murine models. Collectively, our findings describe a new oncolytic vaccinia deletion strain that improves safety and increases tumor cell killing.

6.
AJOB Empir Bioeth ; 10(2): 100-112, 2019.
Article in English | MEDLINE | ID: mdl-30986113

ABSTRACT

Increasing ethical attention and debate is focusing on whether individuals who take part in clinical trials should be given access to post-trial care. However, the main focus of this debate has been upon drug trials undertaken in low-income settings. To broaden this debate, we report findings from interviews with individuals (n = 24) who participated in a clinical trial of a closed-loop system, which is a medical device under development for people with type 1 diabetes that automatically adjusts blood glucose to help keep it within clinically recommended ranges. Individuals were recruited from UK sites and interviewed following trial close-out, at which point the closed-loop had been withdrawn. While individuals were stoical and accepting of the requirement to return the closed-loop, they also conveyed varying degrees of distress. Many described having relaxed diabetes management practices while using the closed-loop and having become deskilled as a consequence, which made reverting back to pre-trial regimens challenging. Participants also described unanticipated consequences arising from using a closed-loop. As well as deskilling, these included experiencing psychological and emotional benefits that could not be sustained after the closed-loop had been withdrawn and participants reevaluating their pre- and post-trial life in light of having used a closed-loop and now perceiving this life much more negatively. Participants also voiced frustrations about experiencing better blood glucose control using a closed-loop and then having to revert to using what they now saw as antiquated and imprecise self-management tools. We use these findings to argue that ethical debates about post-trial provisioning need to be broadened to consider potential psychological and emotional harms, and not just clinical harms, that may result from withdrawal of investigated treatments. We also suggest that individuals may benefit from information about potential nonclinical harms to help make informed decisions about trial participation.


Subject(s)
Blood Glucose Self-Monitoring/instrumentation , Diabetes Mellitus, Type 1/drug therapy , Insulin Infusion Systems , Research Subjects/psychology , Self-Management/methods , Withholding Treatment , Adolescent , Adult , Aged , Anxiety , Blood Glucose/metabolism , Blood Glucose Self-Monitoring/psychology , Diabetes Mellitus, Type 1/blood , Female , Health Services Accessibility , Humans , Insulin Infusion Systems/psychology , Interviews as Topic , Male , Middle Aged , Motivation , Psychological Distress , Qualitative Research , Self-Management/psychology , Young Adult
7.
Diabet Med ; 36(6): 753-760, 2019 06.
Article in English | MEDLINE | ID: mdl-30575114

ABSTRACT

AIMS: We explored whether, how and why moving onto and using a hybrid day-and-night closed-loop system affected people's food choices and dietary practices to better understand the impact of this technology on everyday life and inform recommendations for training and support given to future users. METHODS: Twenty-four adults, adolescents and parents were interviewed before commencing use of the closed-loop system and following its 3-month use. Data were analysed thematically and longitudinally. RESULTS: While participants described preparing and/or eating similar meals to those consumed prior to using a closed-loop, many described feeling more normal and less burdened by diabetes in dietary situations. Individuals also noted how the use of this technology could lead to deskilling (less precise carbohydrate counting) and less healthy eating (increased snacking and portion sizes and consumption of fatty, energy-dense foods) because of the perceived ability of the system to deal with errors in carbohydrate counting and address small rises in blood glucose without a corrective dose needing to be administered. CONCLUSIONS: While there may be quality-of-life benefits to using a closed-loop, individuals might benefit from additional nutritional and behavioural education to help promote healthy eating. Refresher training in carbohydrate counting may also be necessary to help ensure that users are able to undertake diabetes management in situations where the technology might fail or that they take a break from using it.


Subject(s)
Blood Glucose/metabolism , Diabetes Mellitus, Type 1 , Feeding Behavior/physiology , Food Preferences , Insulin Infusion Systems , Insulin/administration & dosage , Adolescent , Adult , Blood Glucose/analysis , Blood Glucose Self-Monitoring/psychology , Blood Glucose Self-Monitoring/statistics & numerical data , Choice Behavior , Diabetes Mellitus, Type 1/blood , Diabetes Mellitus, Type 1/drug therapy , Diabetes Mellitus, Type 1/epidemiology , Diet/statistics & numerical data , Female , Food Preferences/psychology , Humans , Insulin Infusion Systems/psychology , Insulin Infusion Systems/statistics & numerical data , Longitudinal Studies , Male , Middle Aged , Parents/psychology , Qualitative Research , Quality of Life , Surveys and Questionnaires , Young Adult
8.
BMC Endocr Disord ; 18(1): 12, 2018 Feb 20.
Article in English | MEDLINE | ID: mdl-29458348

ABSTRACT

BACKGROUND: Continuous glucose monitoring (CGM) enables users to view real-time interstitial glucose readings and provides information on the direction and rate of change of blood glucose levels. Users can also access historical data to inform treatment decisions. While the clinical and psychological benefits of CGM are well established, little is known about how individuals use CGM to inform diabetes self-management. We explored participants' experiences of using CGM in order to provide recommendations for supporting individuals to make optimal use of this technology. METHODS: In-depth interviews (n = 24) with adults, adolescents and parents who had used CGM for ≥4 weeks; data were analysed thematically. RESULTS: Participants found CGM an empowering tool because they could access blood glucose data effortlessly, and trend arrows enabled them to see whether blood glucose was rising or dropping and at what speed. This predicative information aided short-term lifestyle planning and enabled individuals to take action to prevent hypoglycaemia and hyperglycaemia. Having easy access to blood glucose data on a continuous basis also allowed participants to develop a better understanding of how insulin, activity and food impacted on blood glucose. This understanding was described as motivating individuals to make dietary changes and break cycles of over-treating hypoglycaemia and hyperglycaemia. Participants also described how historical CGM data provided a more nuanced picture of blood glucose control than was possible with blood glucose self-monitoring and, hence, better information to inform changes to background insulin doses and mealtime ratios. However, while participants expressed confidence making immediate adjustments to insulin and lifestyle to address impending hypoglycaemia and hypoglycaemia, most described needing and expecting health professionals to interpret historical CGM data and determine changes to background insulin doses and mealtime ratios. While alarms could reinforce a sense of hypoglycaemic safety, some individuals expressed ambivalent views, especially those who perceived alarms as signalling personal failure to achieve optimal glycaemic control. CONCLUSIONS: CGM can be an empowering and motivational tool which enables participants to fine-tune and optimize their blood glucose control. However, individuals may benefit from psycho-social education, training and/or technological support to make optimal use of CGM data and use alarms appropriately.


Subject(s)
Blood Glucose Self-Monitoring/methods , Caregivers/psychology , Diabetes Mellitus, Type 1/blood , Glycated Hemoglobin/analysis , Hyperglycemia/prevention & control , Hypoglycemia/prevention & control , Parents/psychology , Self-Management , Adolescent , Adult , Aged , Diabetes Mellitus, Type 1/psychology , Female , Follow-Up Studies , Humans , Male , Middle Aged , Qualitative Research , Quality of Life , Young Adult
9.
J Hum Nutr Diet ; 31(4): 451-462, 2018 08.
Article in English | MEDLINE | ID: mdl-29159932

ABSTRACT

BACKGROUND: Strong evidence links the consumption of a Mediterranean diet (MD) with a reduced cardiovascular disease (CVD) risk; however, there is uncertainty as to whether non-Mediterranean regions will adopt this diet. The present qualitative research aimed to investigate attitudes towards a MD in individuals at high CVD risk in a Northern European population. This information is needed to inform development of MD interventions in non-Mediterranean high-risk populations. METHODS: Focus groups (n = 12) were held with individuals at high CVD risk from Northern Europe (≥2 CVD risk factors, aged ≥50 years, no established CVD/type 2 diabetes). Attitudes to dietary change towards a MD were explored. Data were analysed using inductive thematic analysis. RESULTS: Sixty-seven adults participated (60% female, mean age 64 years). There was some awareness of the term MD but limited knowledge of its composition. Barriers to general dietary change were evident, including perception of expense, concern over availability, expectation of time commitment, limited knowledge, lack of cooking skills, amount and conflicting nature of media information on diets, changing established eating habits and resistance to dietary change. Barriers specific to MD adoption were also identified, including perceived difficulty living in a colder climate, perceived impact on body weight, acceptability of a MD and cultural differences. CONCLUSIONS: Knowledge of a MD was limited in this Northern European sample at high CVD risk. In addition to general barriers to dietary change, barriers specific to a MD were identified. These findings have implications for the development of interventions aiming to promote MD adoption in non-Mediterranean populations.


Subject(s)
Behavior Therapy/methods , Cardiovascular Diseases/prevention & control , Diet, Mediterranean/psychology , Feeding Behavior/psychology , Health Knowledge, Attitudes, Practice , Aged , Costs and Cost Analysis , Diet, Mediterranean/economics , Europe , Female , Focus Groups , Humans , Income , Male , Middle Aged , Patient Compliance/psychology , Perception , Risk Factors
10.
BMC Med Ethics ; 18(1): 36, 2017 May 24.
Article in English | MEDLINE | ID: mdl-28539111

ABSTRACT

BACKGROUND: Obtaining prospective written consent from women to participate in trials when they are experiencing an obstetric emergency is challenging. Alternative consent pathways, such as gaining verbal consent at enrolment followed, later, by obtaining written consent, have been advocated by some clinicians and bioethicists but have received little empirical attention. We explored women's and staff views about the consent procedures used during the internal pilot of a trial (GOT-IT), where the protocol permitted staff to gain verbal consent at recruitment. METHODS: Interviews with staff (n = 27) and participating women (n = 22). Data were analysed thematically and interviews were cross-compared to identify differences and similarities in participants' views about the consent procedures used. RESULTS: Women and some staff highlighted benefits to obtaining verbal consent at trial enrolment, including expediting recruitment and reducing the burden on those left exhausted by their births. However, most staff with direct responsibility for taking consent expressed extreme reluctance to proceed with enrolment until they had obtained written consent, despite being comfortable using verbal procedures in their clinical practice. To account for this resistance, staff drew a strong distinction between research and clinical care and suggested that a higher level of consent was needed when recruiting into trials. In doing so, staff emphasised the need to engage women in reflexive decision-making and highlighted the role that completing the consent form could play in enabling and evidencing this process. While most staff cited their ethical responsibilities to women, they also voiced concerns that the absence of a signed consent form at recruitment could expose them to greater risk of litigation were an individual to experience a complication during the trial. Inexperience of recruiting into peripartum trials and limited availability of staff trained to take consent also reinforced preferences for obtaining written consent at recruitment. CONCLUSIONS: While alternative consent pathways have an important role to play in advancing emergency medicine research, and may be appreciated by potential recruits, they may give rise to unintended ethical and logistical challenges for staff. Staff would benefit from training and support to increase their confidence and willingness to recruit into trials using alternative consent pathways. TRIAL REGISTRATION: This qualitative research was undertaken as part of the GOT-IT Trial (trial registration number: ISCRTN 88609453 ). Date of registration 26/03/2014.


Subject(s)
Documentation , Emergency Service, Hospital , Informed Consent , Patient Selection , Verbal Behavior , Adolescent , Adult , Female , Health Services Research , Humans , Informed Consent/ethics , Interviews as Topic , Obstetrics , Pregnancy , Prospective Studies , Qualitative Research , Young Adult
11.
Diabet Med ; 34(8): 1050-1060, 2017 08.
Article in English | MEDLINE | ID: mdl-28391607

ABSTRACT

AIMS: To explore the everyday experiences of children (aged ≤ 12 years) with Type 1 diabetes to identify factors that help or hinder diabetes self-management practices. METHODS: Eight databases (Embase, Medline, CINAHL, Web of Science, PsychInfo, ASSIA, ERIC and ProQuest Dissertations) were searched in 2016 to identify qualitative studies exploring children's views about self-managing diabetes. Data were extracted, coded and analysed using thematic synthesis. RESULTS: Eighteen studies from five countries were included in the review. Synthesis of studies' findings resulted in the identification of three overarching analytical themes. The first theme, 'Understandings of diabetes and involvement in self-management', outlines ways in which children understand diabetes and develop self-management responsibilities. The second theme, 'Disruption to life and getting on with it', reports children's frustrations at disruptions to everyday life when managing diabetes, and how attempts to appear normal to family and friends affect self-management practices. The third theme, 'Friends' support', describes how friends' reactions and responses to diabetes affect children's ability to appear normal and willingness to disclose information about diabetes, and support provided by 'informed friends', or peers with diabetes. CONCLUSIONS: Although the synthesis has identified how children's everyday life experiences inform ways in which they undertake diabetes self-management, it was not possible to determine new ways to provide support. To help children optimise their glycaemic control, further work should be undertaken to identify their need for support and which takes into account the potential ways in which parents, friends and peers can offer assistance.


Subject(s)
Activities of Daily Living , Diabetes Mellitus, Type 1/therapy , Health Knowledge, Attitudes, Practice , Hyperglycemia/prevention & control , Hypoglycemia/prevention & control , Interpersonal Relations , Self-Management , Child , Child, Preschool , Combined Modality Therapy/adverse effects , Cost of Illness , Diabetes Mellitus, Type 1/blood , Family Relations , Friends , Humans , Peer Group , Psychosocial Support Systems , Qualitative Research
12.
BJOG ; 124(13): 2001-2008, 2017 Dec.
Article in English | MEDLINE | ID: mdl-28421651

ABSTRACT

OBJECTIVE: To explore the experiences of women in Scotland who return home to complete medical termination of pregnancy (TOP) ≤63 days of gestation, after being administered with mifepristone and misoprostol at an NHS TOP clinic. DESIGN: Qualitative interview study. SETTING: One National Health Service health board (administrative) area in Scotland. POPULATION OR SAMPLE: Women in Scotland who had undergone medical TOP ≤63 days, and self-managed passing the pregnancy at home; recruited from three clinics in one NHS health board area between January and July 2014. METHODS: In-depth, semi-structured interviews with 44 women in Scotland who had recently undergone TOP ≤63 days of gestation, and who returned home to pass the pregnancy. Data were analysed thematically using an approach informed by the Framework method. MAIN OUTCOME MEASURES: Women's experiences of self-management of TOP ≤63 days of gestation. RESULTS: Key themes emerging from the analysis related to self-administration of misoprostol in clinic; reasons for choosing home self-management; facilitation of self-management and expectation-setting; experiences of getting home; self-managing and monitoring treatment progress; support for self-management (in person and remotely); and pregnancy self-testing to confirm completion. CONCLUSIONS: Participants primarily found self-administration of misoprostol and home self-management to be acceptable and/or preferable, particularly where this was experienced as a decision made jointly with health professionals. The way in which home self-management is presented to women at clinic requires ongoing attention. Women could benefit from the option of home administration of misoprostol. TWEETABLE ABSTRACT: Women undergoing medical TOP 63 days found home self-management to be acceptable and/or preferable.


Subject(s)
Abortifacient Agents, Steroidal/administration & dosage , Abortion, Induced/methods , Abortion, Induced/psychology , Mifepristone/administration & dosage , Misoprostol/administration & dosage , Patient Satisfaction/statistics & numerical data , Self-Management/statistics & numerical data , Adult , Decision Making , Female , Humans , Nurse-Patient Relations , Pain Management , Patient Education as Topic , Pregnancy , Pregnancy Trimester, First , Qualitative Research , Scotland , Self Administration , Self-Management/psychology , Young Adult
13.
Diabet Med ; 33(2): 243-51, 2016 Feb.
Article in English | MEDLINE | ID: mdl-26248590

ABSTRACT

AIMS: To explore health professionals' views about insulin pump therapy [continuous subcutaneous insulin infusion (CSII)] and the types of individuals they thought would gain greatest clinical benefit from using this treatment. METHODS: In-depth interviews with staff (n = 18) who delivered the Relative Effectiveness of Pumps Over MDI and Structured Education (REPOSE) trial. Data were analysed thematically. RESULTS: Staff perceived insulin pumps as offering a better self-management tool to some individuals due to the drip feed of insulin, the ability to alter basal rates and other advanced features. However, staff also noted that, because of the diversity of features on offer, CSII is a more technically complex therapy to execute than multiple daily injections. For this reason, staff described how, alongside clinical criteria, they had tended to select individuals for CSII in routine clinical practice based on their perceptions about whether they possessed the personal and psychological attributes needed to make optimal use of pump technology. Staff also described how their assumptions about personal and psychological suitability had been challenged by working on the REPOSE trial and observing individuals make effective use of CSII who they would not have recommended for this type of therapy in routine clinical practice. CONCLUSIONS: Our findings add to those studies that highlight the difficulties of using patient characteristics and variables to predict clinical success using CSII. To promote equitable access to CSII, attitudinal barriers and prejudicial assumptions amongst staff about who is able to make effective use of CSII may need to be addressed.


Subject(s)
Attitude of Health Personnel , Diabetes Mellitus, Type 1/drug therapy , Hyperglycemia/prevention & control , Hypoglycemia/prevention & control , Insulin Infusion Systems , Patient Education as Topic , Precision Medicine , Adaptation, Psychological , Adult , Clinical Decision-Making , Cluster Analysis , Combined Modality Therapy/adverse effects , Combined Modality Therapy/nursing , Diabetes Mellitus, Type 1/blood , Diabetes Mellitus, Type 1/diet therapy , Diabetes Mellitus, Type 1/nursing , Follow-Up Studies , Humans , Hypoglycemia/chemically induced , Hypoglycemia/epidemiology , Insulin Infusion Systems/adverse effects , Nurse Clinicians , Nutritionists , Patient Compliance , Precision Medicine/nursing , Prejudice/prevention & control , Professional-Patient Relations , Qualitative Research , Risk , United Kingdom/epidemiology , Workforce
14.
Diabet Med ; 32(5): 627-34, 2015 May.
Article in English | MEDLINE | ID: mdl-25581347

ABSTRACT

AIMS: Continuous subcutaneous insulin infusion delivered via a pump is increasingly recommended for younger children with Type 1 diabetes. Our aims were: to understand the impact on parents who care for young children using insulin pumps; to help interpret psychological outcomes reported in quantitative research; and to inform provision of support to future parents. METHODS: We conducted in-depth interviews with 19 parents of children (aged ≤ 12 years) with Type 1 diabetes who used an insulin pump. Data were analysed thematically. RESULTS: Parents reported multiple benefits from using insulin pumps, including: no longer having to administer painful injections; fewer restrictions on the frequency, timing and carbohydrate contents of snacks and meals; and improvements in family life and their child's glycaemic control. Parents liked and felt less anxious about using bolus calculators to determine insulin doses; however, parents also described undertaking additional and unanticipated work to manage their child's diabetes using a pump. This included performing more blood glucose tests to calculate insulin doses for snacks and to address their concerns that the pump increased their child's risk of hypoglycaemia. Some parents reported doing additional blood glucose checks because they could adjust pump settings to better manage hypo- and hyperglycaemia. CONCLUSIONS: Parents liked and perceived benefits for their child and themselves from using an insulin pump; however, parents would benefit from being made aware of the additional work involved in using a pump and also from education and support to address concerns about hypoglycaemia. Better measures to evaluate parents' experiences are also recommended.


Subject(s)
Caregivers/psychology , Diabetes Mellitus, Type 1/drug therapy , Insulin/administration & dosage , Insulin/therapeutic use , Interview, Psychological , Parents/psychology , Adult , Blood Glucose/metabolism , Child , Child, Preschool , Diabetes Mellitus, Type 1/blood , Disease Management , Female , Humans , Hypoglycemic Agents/administration & dosage , Hypoglycemic Agents/therapeutic use , Insulin Infusion Systems , Life Style , Male , Qualitative Research , Retrospective Studies , Scotland , Treatment Outcome
15.
Diabet Med ; 32(8): 1063-70, 2015 Aug.
Article in English | MEDLINE | ID: mdl-25472898

ABSTRACT

AIMS: To explore the difficulties parents encounter in trying to achieve clinically recommended blood glucose levels and how they could be better supported to optimize their child's glycaemic control. METHODS: In-depth interviews were conducted with 54 parents of children with Type 1 diabetes (≤ 12 years). Data were analysed thematically. RESULTS: Parents described being reluctant and finding it difficult to keep their child's blood glucose levels consistently within clinically recommended ranges. As well as worrying about their child's ability to detect/report hypoglycaemia, parents highlighted a multitude of factors that had an impact on their child's blood glucose levels and over which they could exercise little control. These included: leaving their child with other caregivers who could not be trusted to detect hypoglycaemia; difficulties remotely monitoring and regulating their child's food consumption and activity; and physical and social changes accompanying childhood development. Most parents used two sets of blood glucose targets, with clinically recommended targets employed when their child was in their immediate care and higher targets when in the care of others. Parents described health professionals as lacking understanding of the difficulties they encountered keeping blood glucose within target ranges and needing more empathetic, tailored and realistic advice. CONCLUSION: It is not parents' fear of hypoglycaemia in isolation that leads to decisions to raise their child's blood glucose but, rather, parental fear in conjunction with other factors and considerations. Hence, to improve diabetes management in children, these factors may need to be addressed; for instance, by training others in diabetes management and using new technologies. Changes to consultations are also recommended.


Subject(s)
Attitude to Health , Diabetes Mellitus, Type 1/drug therapy , Hypoglycemia/prevention & control , Hypoglycemic Agents/therapeutic use , Parents , Adult , Anxiety , Blood Glucose/metabolism , Blood Glucose Self-Monitoring , Caregivers , Child , Child, Preschool , Diabetes Mellitus, Type 1/metabolism , Fear , Female , Glycated Hemoglobin/metabolism , Humans , Hypoglycemia/chemically induced , Male , Middle Aged , Qualitative Research
16.
Diabet Med ; 32(3): 391-8, 2015 Mar.
Article in English | MEDLINE | ID: mdl-25363466

ABSTRACT

AIMS: To compare, in a randomized controlled non-inferiority trial, the outcomes of the traditional format for Dose Adjustment for Normal Eating structured education courses; that is, one delivered over 5 consecutive days (1-week course) with a variant of this format delivered 1 day a week for 5 consecutive weeks (5-week course). METHODS: Adults with Type 1 diabetes, from seven UK Dose Adjustment For Normal Eating training centres, were individually randomized, stratified by centre, to receive either a 1-week or 5-week course. A qualitative study was embedded within the trial to explore patients' experiences. RESULTS: In total, 213 patients were randomized and 160 completed the study procedures. In the per-protocol analysis, the difference in HbA1c levels (95% CI) between the arms at 6 months was 0.4 mmol/mol (-2.4, 3.1) or 0.03% (-0.22, 0.28) and -0.9 mmol/mol (-3.9, 2.2) or -0.08% (-0.36, 0.20) at 12 months. All confidence limits were within the non-inferiority margin of ± 5.5 mmol/mol (0.5%) for HbA1c %. For those patients with a baseline HbA1c of ≥ 58 mmol/mol (≥ 7.5%) the mean change (95% CI) in HbA1c was -2.2 mmol/mol (-4.0, -0.4) or -0.20% (-0.37, -0.04) at 6 months (P = 0.016), and -2.0 mmol/mol (-4.1, 0.04) or -0.18% (-0.37 to 0.004) at 12 months (P = 0.055). Episodes of severe hypoglycaemia were decreased by 82% [relative risk 0.18 (95% CI 0.03-0.936); P = 0.042], psychosocial outcomes improved significantly, and the difference between arms was not significant. Qualitative interviews showed that patients overwhelmingly favoured the format of course that they attended. CONCLUSIONS: In summary, 5-week and 1-week Dose Adjustment for Normal Eating courses are equivalent in terms of biomedical and psychosocial outcomes, and we were persuaded that both course formats should be made available in routine care.


Subject(s)
Diabetes Mellitus, Type 1/physiopathology , Education , Feeding Behavior/physiology , Hypoglycemia/epidemiology , Hypoglycemia/prevention & control , Patient Education as Topic , Adult , Aged , Cost-Benefit Analysis , Diabetes Mellitus, Type 1/complications , Education/economics , Female , Glycated Hemoglobin/metabolism , Humans , Incidence , Male , Middle Aged , Patient Education as Topic/economics , Psychology , Risk Factors , Time Factors , Treatment Outcome
17.
Diabetes Res Clin Pract ; 106(3): 443-50, 2014 Dec.
Article in English | MEDLINE | ID: mdl-25451897

ABSTRACT

AIMS: We explored people's reasons for, and experiences of, using bolus advisors to determine insulin doses; and, their likes/dislikes of this technology. SUBJECTS AND METHODS: 42 people with type 1 diabetes who had received instruction in use of bolus advisors during a structured education course were interviewed post-course and 6 months later. Data were analysed thematically. RESULTS: Participants who considered themselves to have poor mathematical skills highlighted a gratitude for, and heavy reliance on, advisors. Others liked and chose to use advisors because they saved time and effort calculating doses and/or had a data storage facility. Follow-up interviews highlighted that, by virtue of no longer calculating their doses, participants could become deskilled and increasingly dependent on advisors. Some forgot what their mealtime ratios were; others reported a misperception that, because they were pre-programmed during courses, these parameters never needed changing. Use of data storage facilities could hinder effective review of blood glucose data and some participants reported an adverse impact on glycaemic control. DISCUSSION: While participants liked and perceived benefits to using advisors, there may be unintended consequences to giving people access to this technology. To promote effective use, on-going input and education from trained health professionals may be necessary.


Subject(s)
Blood Glucose Self-Monitoring/methods , Diabetes Mellitus, Type 1/drug therapy , Drug Dosage Calculations , Hypoglycemic Agents/administration & dosage , Medication Adherence , Perception , Adult , Algorithms , Blood Glucose/metabolism , Diabetes Mellitus, Type 1/blood , Female , Follow-Up Studies , Glycated Hemoglobin/metabolism , Humans , Hyperglycemia/blood , Hyperglycemia/prevention & control , Hypoglycemia/blood , Hypoglycemia/prevention & control , Insulin/administration & dosage , Male , Middle Aged , Patient Satisfaction , Treatment Outcome
18.
Health Educ Res ; 29(5): 799-811, 2014 Oct.
Article in English | MEDLINE | ID: mdl-24851865

ABSTRACT

Using rewards may be an effective method to positively influence adolescent eating behaviour, but evidence regarding this approach is limited. The aim of this study was to explore young adolescent views about a proposed reward intervention associated with food choice in school canteens. Focus groups were held in 10 schools located in lower socioeconomic areas within Northern Ireland and involved 90 pupils aged 11-12 years (54 girls, 36 boys). Our findings indicated a high degree of acceptability for a reward scheme but there was major diversity in the type of rewards valued by pupils, largely defined by geographical area and socio-cultural differences. Pupils from rural areas tended to emphasize group-based and longer-term rewards, whereas pupils from urban-city schools tended to suggest individualistic and immediate rewards. The major factors influencing food choice were food price, value for money, taste and visual appearance. Pupils felt that factors outside of their control, such as being assigned to the second lunch sitting placed considerable constraints on their food choice. This research not only indicated a high degree of acceptability for a rewards-based intervention but also highlighted a number of socio-cultural and environmental factors that should be considered by researchers when developing such an intervention.


Subject(s)
Adolescent Behavior/psychology , Feeding Behavior/psychology , Food Preferences/psychology , Health Promotion , Reward , Adolescent , Child , Female , Focus Groups , Food Services , Health Behavior , Humans , Male , Northern Ireland , Schools
19.
Diabet Med ; 31(12): 1625-30, 2014 Dec.
Article in English | MEDLINE | ID: mdl-24823681

ABSTRACT

AIMS: To investigate the knowledge of alcohol and carbohydrate content of commonly consumed alcoholic drinks among young adults with Type 1 diabetes and to explore alcohol consumption while identifying diabetes self-management strategies used to minimize alcohol-associated risk. METHOD: We conducted an open-access, multiple-choice web survey to investigate knowledge of alcohol and carbohydrate content of typical alcoholic drinks using images. Respondents to the survey also recorded their current alcohol consumption and diabetes self-management strategies when drinking. RESULTS: A total of 547 people aged 18-30 years responded to the survey (341 women; 192 men; mean (sd) age 24.5 (3.7) years), of whom 365 (66.7%) drank alcohol. In all, 84 (32.9%) women and 31 (22.6%) men scored higher than the cut-off score for increased-risk drinking. Knowledge accuracy of alcohol units was poor: only 7.3% (n = 40) correctly identified the alcohol content of six or more out of 10 drinks. Knowledge of carbohydrate content was also poor: no respondent correctly identified the carbohydrate content of six or more out of 10 drinks. Various and inconsistent strategies to minimize alcohol-associated risk were reported. CONCLUSIONS: Alcohol consumption was common among the survey respondents, but knowledge of alcohol and carbohydrate content was poor. Greater alcohol-related health literacy is required to minimize alcohol-associated risk. Further research should help develop effective strategies to improve health literacy and support safe drinking for young adults with Type 1 diabetes.


Subject(s)
Alcohol Drinking/epidemiology , Alcoholic Beverages , Diabetes Mellitus, Type 1/therapy , Dietary Carbohydrates , Ethanol , Health Knowledge, Attitudes, Practice , Adolescent , Adult , Disease Management , Female , Health Literacy , Humans , Male , Self Care , Young Adult
20.
Cancer Res ; 74(13): 3567-78, 2014 Jul 01.
Article in English | MEDLINE | ID: mdl-24812275

ABSTRACT

As cancer treatment tools, oncolytic viruses (OV) have yet to realize what some see as their ultimate clinical potential. In this study, we have engineered a chimeric vesicular stomatitis virus (VSV) that is devoid of its natural neurotoxicity while retaining potent oncolytic activity. The envelope glycoprotein (G) of VSV was replaced with a variant glycoprotein of the lymphocytic choriomeningitis virus (LCMV-GP), creating a replicating therapeutic, rVSV(GP), that is benign in normal brain but can effectively eliminate brain cancer in multiple preclinical tumor models in vivo. Furthermore, it can be safely administered systemically to mice and displays greater potency against a spectrum of human cancer cell lines than current OV candidates. Remarkably, rVSV(GP) escapes humoral immunity, thus, for the first time, allowing repeated systemic OV application without loss of therapeutic efficacy. Taken together, rVSV(GP) offers a considerably improved OV platform that lacks several of the major drawbacks that have limited the clinical potential of this technology to date.


Subject(s)
Antigens, Viral/genetics , Glioblastoma/therapy , Glycoproteins/genetics , Membrane Glycoproteins/genetics , Oncolytic Virotherapy/adverse effects , Oncolytic Viruses/genetics , Vesicular stomatitis Indiana virus/genetics , Viral Envelope Proteins/genetics , Viral Proteins/genetics , Animals , Antibodies, Neoplasm/immunology , Antibodies, Viral/immunology , Cell Line, Tumor , Cricetinae , Female , Genetic Vectors , Humans , Immune Evasion , Immunity, Humoral , Lymphocytic choriomeningitis virus/genetics , Mice , Mice, Inbred BALB C , Mice, Inbred NOD , Mice, SCID , Neoplasm Transplantation , Protein Engineering
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