scholarly journals Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living With Long-Term Health Conditions: A Narrative Review

2021 ◽  
Vol 9 ◽  
Author(s):  
Emma Simpson ◽  
Richard Brown ◽  
Elizabeth Sillence ◽  
Lynne Coventry ◽  
Karen Lloyd ◽  
...  
Keyword(s):  
Digital Technology ◽  
Health Data ◽  
Health Conditions ◽  
Clinical Settings ◽  
Privacy And Security ◽  
Enacted Stigma ◽  
Identity Privacy ◽  
Additional Support ◽  
The Impact

Using digital technology to share patient-generated health data has the potential to improve the self-management of multiple long-term health conditions. Sharing these data can allow patients to receive additional support from healthcare professionals and peer communities, as well as enhance their understanding of their own health. A deeper understanding of the concerns raised by those living with long-term health conditions when considering whether to share health data via digital technology may help to facilitate effective data sharing practices in the future. The aim of this review is to identify whether trust, identity, privacy and security concerns present barriers to the successful sharing of patient-generated data using digital technology by those living with long-term health conditions. We also address the impact of stigma on concerns surrounding sharing health data with others. Searches of CINAHL, PsychInfo and Web of Knowledge were conducted in December 2019 and again in October 2020 producing 2,581 results. An iterative review process resulted in a final dataset of 23 peer-reviewed articles. A thorough analysis of the selected articles found that issues surrounding trust, identity, privacy and security clearly present barriers to the sharing of patient-generated data across multiple sharing contexts. The presence of enacted stigma also acts as a barrier to sharing across multiple settings. We found that the majority of literature focuses on clinical settings with relatively little attention being given to sharing with third parties. Finally, we suggest the need for more solution-based research to overcome the discussed barriers to sharing.

scholarly journals Measurement properties of the minimal disease activity criteria for psoriatic arthritis

RMD Open ◽  
2019 ◽  
Vol 5 (2) ◽  
pp. e001002 ◽  
Author(s):  
Laura C Coates ◽  
Vibeke Strand ◽  
Hilary Wilson ◽  
Dennis Revicki ◽  
Brad Stolshek ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Disease Activity ◽  
Clinical Status ◽  
Measurement Properties ◽  
Minimal Disease Activity ◽  
Minimal Disease ◽  
Additional Support ◽  
Randomised Controlled ◽  
The Impact

ObjectiveTo comprehensively assess evidence on the measurement properties of the minimal disease activity (MDA) criteria, a composite measure of the state of disease activity in psoriatic arthritis (PsA).MethodsA targeted literature review was conducted to identify studies that informed the validity and/or ability of the MDA to detect change among patients known to have experienced a change in clinical status. The search was conducted using MEDLINE and Embase databases (published as of October 2017). Pertinent articles provided by investigators and identified from select conference proceedings were also evaluated.ResultsA total of 20 publications met the inclusion criteria. The MDA criteria were consistently associated with other indicators of disease activity/severity. The ability of the MDA criteria to detect change was supported in randomised controlled trials (n=10), with a greater percentage of patients randomised to active treatments achieving MDA relative to patients in comparator arms. Long-term observational studies (n=2) provided additional support for the ability of the MDA to detect within-subject change in the real-world settings.ConclusionEvidence supports the MDA as a valid measure of disease activity in PsA that can detect between-group and within-subject change. The MDA is a comprehensive measure and clinically meaningful endpoint to assess the impact of interventions on PsA disease activity.

Recruitment to a trial of self-care skills training in long-term health conditions: Analysis of the impact of patient attitudes and preferences

2006 ◽  
Vol 27 (1) ◽  
pp. 49-56 ◽  
Author(s):  
Peter Bower ◽  
Anne Kennedy ◽  
David Reeves ◽  
Claire Gately ◽  
Victoria Lee ◽  
...  
Keyword(s):  
Self Care ◽  
Skills Training ◽  
Health Conditions ◽  
Patient Attitudes ◽  
The Impact

scholarly journals Endoscopic and Histologic Predictors of Outcomes in Pediatric Ulcerative Colitis—Caveat Emptor

2021 ◽  
Vol 9 ◽  
Author(s):  
Lorraine Stallard ◽  
Séamus Hussey
Keyword(s):  
Ulcerative Colitis ◽  
Mucosal Healing ◽  
Term Treatment ◽  
Clinical Settings ◽  
Adult Disease ◽  
Long Term Treatment ◽  
Acute Severe Colitis ◽  
The Impact ◽  
Severe Colitis

The impact of endoscopic and histological mucosal healing on outcomes in adult settings is impressive. Despite many clinical parallels, pediatric ulcerative colitis (UC) is set apart from adult disease in several respects. Many frequently used indices are not fully validated, especially in pediatric settings, and consensus on precise definitions in clinical settings are lacking. Endoscopic mucosal healing is an acceptable long-term treatment goal in pediatrics, but not histologic normalization. Early prediction of disease course in UC may allow treatment stratification of patients according to risks of relapse, acute severe colitis, and colectomy. Putative endoscopic and histologic predictors of poor clinical outcomes in adults have not held true in pediatric settings, including baseline endoscopic extent, endoscopic severity, and specific histologic characteristics which are less prevalent in pediatrics at diagnosis. In this mini-review we appraise predictive endoscopic and histologic factors in pediatric UC with reference to relapse, severe colitis, and colectomy risks. We recommend that clinicians routinely use endoscopic and histologic sores to improve the quality of clinical and research practice. The review summarizes differences between adult and pediatric prediction data, advises special consideration of those with primary sclerosing cholangitis, and suggests areas for future study in this field.

scholarly journals Housing Needs of Ageing Veterans Who Have Experienced Limb Loss

2020 ◽  
Vol 17 (5) ◽  
pp. 1791
Author(s):  
Gemma Wilson ◽  
Gill McGill ◽  
Alison Osborne ◽  
Matthew D. Kiernan
Keyword(s):  
Life Story ◽  
Military Veterans ◽  
Armed Forces ◽  
Limb Loss ◽  
Direct Result ◽  
Housing Needs ◽  
Life Story Interviews ◽  
Additional Support ◽  
The Impact

Military veterans can experience limb loss as a direct result of conflict, an accident, illness or injury. Whatever the cause, there is a need to recognise the long-term consequences and challenges of limb loss on maintaining independence in one’s home. This study aimed to examine the housing needs of veterans experiencing limb loss, and the impact of limb loss on housing needs and home adaptations of ageing military veterans. Thirty-two military veterans (aged 43–95) participated in this study and up to three life-story interviews were carried out with each participant. Two themes were generated: availability of support and changing housing needs. It is evident from the findings that military veterans are unique in various ways, specifically due to military culture, geographical relocation and the additional support that is available to the Armed Forces Community. This must be considered in long-term support to maintain independence in the home.

scholarly journals Caregivers’ Mental Health and Somatic Symptoms During COVID-19

2020 ◽  
Author(s):  
Sung S Park
Keyword(s):  
Mental Health ◽  
Physical Health ◽  
Negative Binomial ◽  
Somatic Symptoms ◽  
Health Conditions ◽  
Group Differences ◽  
Short Term ◽  
The Impact ◽  
Mental And Physical Health

Abstract Objectives This study examines differences in the mental and physical health of the U.S. population during the early stages of the COVID-19 pandemic among 3 groups: noncaregivers, short-term caregivers (1 year or less), and long-term caregivers (greater than 1 year). Methods Data from the Understanding America Study are used to describe group differences in reports of psychological distress and somatic symptoms. Logistic and negative binomial regression models are used to examine whether these differences persist after adjusting for demographic, socioeconomic, and prepandemic health conditions. To understand within-group differences in caregiving demands, the intensity of care provided by short-term and long-term caregivers, as well as selected patients’ health conditions are summarized. Results Adults’ mental and physical health varied substantially by caregiver status. Caregivers continued to fare worse than noncaregivers in terms of mental health and fatigue, and long-term caregivers were more likely to report headache, body aches, and abdominal discomfort than both short-term caregivers and noncaregivers, net of controls. The nature of caregiving differed between short-term and long-term caregivers, with the latter more likely to provide greater hours of care, and to be looking after patients with permanent medical conditions. Discussion Efforts to understand and mitigate the impact of the pandemic on population health should include caregivers, whose mental and physical health were already vulnerable before COVID-19.

Is health coaching the next panacea in healthcare reform?

2021 ◽  
Vol 32 (8) ◽  
pp. 323-326
Author(s):  
Catherine Best
Keyword(s):  
Chronic Disease ◽  
Healthcare Reform ◽  
Healthy Lifestyle ◽  
Communicable Disease ◽  
Essential Element ◽  
Health Coaching ◽  
Health Conditions ◽  
The Impact ◽  
Non Communicable Disease

Health coaching aims to empower patients to self-manage their long-term health conditions. Catherine Best explores the effect health coaching can have on patients and the shifts that are required to deliver it Non-communicable diseases now account for the vast majority of deaths globally. It is recognised that personalised care is key to managing non-communicable disease and health coaching is considered an essential element. Health coaching is a developing field of practice that encourages patients to adopt healthy lifestyle behaviours that can avert the impact of chronic disease. This article explores the effect health coaching can have on patients and the shifts that are required to deliver it.

scholarly journals Health outcomes of smoking during pregnancy and the postpartum period: an umbrella review

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Tuba Saygın Avşar ◽  
Hugh McLeod ◽  
Louise Jackson
Keyword(s):  
Systematic Review ◽  
Health Outcomes ◽  
Causal Link ◽  
Health Impacts ◽  
Health Conditions ◽  
Umbrella Review ◽  
Short Term ◽  
Smoking During Pregnancy ◽  
The Impact

Abstract Background Smoking during pregnancy (SDP) and the postpartum period has serious health outcomes for the mother and infant. Although some systematic reviews have shown the impact of maternal SDP on particular conditions, a systematic review examining the overall health outcomes has not been published. Hence, this paper aimed to conduct an umbrella review on this issue. Methods A systematic review of systematic reviews (umbrella review) was conducted according to a protocol submitted to PROSPERO (CRD42018086350). CINAHL, EMBASE, MEDLINE, PsycINFO, Web of Science, CRD Database and HMIC databases were searched to include all studies published in English by 31 December 2017, except those focusing exclusively on low-income countries. Two researchers conducted the study selection and quality assessment independently. Results The review included 64 studies analysing the relationship between maternal SDP and 46 health conditions. The highest increase in risks was found for sudden infant death syndrome, asthma, stillbirth, low birth weight and obesity amongst infants. The impact of SDP was associated with the number of cigarettes consumed. According to the causal link analysis, five mother-related and ten infant-related conditions had a causal link with SDP. In addition, some studies reported protective impacts of SDP on pre-eclampsia, hyperemesis gravidarum and skin defects on infants. The review identified important gaps in the literature regarding the dose-response association, exposure window, postnatal smoking. Conclusions The review shows that maternal SDP is not only associated with short-term health conditions (e.g. preterm birth, oral clefts) but also some which can have life-long detrimental impacts (e.g. obesity, intellectual impairment). Implications This umbrella review provides a comprehensive analysis of the overall health impacts of SDP. The study findings indicate that while estimating health and cost outcomes of SDP, long-term health impacts should be considered as well as short-term effects since studies not including the long-term outcomes would underestimate the magnitude of the issue. Also, interventions for pregnant women who smoke should consider the impact of reducing smoking due to health benefits on mothers and infants, and not solely cessation.

scholarly journals A qualitative investigation of lived experiences of long-term health condition management with people who are food insecure

2020 ◽  
Author(s):  
Flora Douglas ◽  
Emma MacIver ◽  
Chris Yuill
Keyword(s):  
Health Care ◽  
Food Insecurity ◽  
Health Condition ◽  
Health Conditions ◽  
Ethical Implications ◽  
North East ◽  
Increased Risk ◽  
The Uk ◽  
The Impact

Abstract Background As more people are living with one or more chronic health conditions, supporting patients to become activated, self-managers of their conditions has become a key health policy focus both in the UK and internationally. There is also growing evidence in the UK that those with long term health conditions have an increased risk of being food insecure. While international evidence indicates that food insecurity adversely affects individual’s health condition management capability, little is known about how those so affected manage their condition(s) in this context. An investigation of lived experience of health condition management was undertaken with food insecure people living in north east Scotland. The study aimed to explore the challenges facing food insecure people in terms of, i. their self-care condition management practices, and ii. disclosing and discussing the experience of managing their condition with a health care professional, and iii. notions of the support they might wish to receive from them. Methods Twenty in-depth interviews were conducted with individuals attending a food bank and food pantry in north east Scotland. Interview audio recordings were fully transcribed and thematically analysed.Results Individuals reporting multiple physical and mental health conditions, took part in the study. Four main themes were identified i.e.: 1. food practices, trade-offs and compromises, that relate to economic constraints and lack of choice; 2. illness experiences and food as they relate to physical and mental ill-health; 3. (in)visibility of participants’ economic vulnerability within health care consultations; and 4. perceptions and expectations of the health care system.Conclusions This study, the first of its kind in the UK, indicated that participants’ health condition management aspirations were undermined by the experience of food insecurity, and that their health care consultations in were, on the whole, devoid of discussions of those challenges. As such, the study indicated practical and ethical implications for health care policy, practice and research associated with the risk of intervention-generated health inequalities that were suggested by this study. Better understanding is needed about the impact of household food insecurity on existing ill health, wellbeing and health care use across the UK.

scholarly journals Psychological and Medico-Legal Perspectives on Electroconvulsive Therapy and Patient-Centered Care: A Short Review of Cross-Cutting Issues

2020 ◽  
Vol 13 (1) ◽  
pp. 253-263
Author(s):  
Valeria Tullio ◽  
Stefania Zerbo ◽  
Antonietta Lanzarone ◽  
Salvatore Procaccianti ◽  
Antonina Argo
Keyword(s):  
Electroconvulsive Therapy ◽  
Short Review ◽  
Point Of View ◽  
Clinical Settings ◽  
Patient Centered ◽  
Medical Settings ◽  
Scientific World ◽  
Centered Care ◽  
The Impact

Electroconvulsive therapy is a treatment that, since its first administration, has been a major topic for debate within the scientific world. In recent years, the debate has become increasingly focused on the short- and/or long-term efficacy of electroconvulsive therapy, its appropriateness in clinical settings, its mechanism of action, the impact evaluation of transient and/or persistent adverse effects, and the drafting of international guidelines, etc. From the authors’ point of view, these themes are inevitably crossed by three other fundamental issues of significant psychological, relational, ethical, and medico-legal impact. Still, they are less studied than purely biomedical issues in recent times. Therefore, the aim of this article is to focus on the following cross-cutting issues: the therapist-patient relationship, the patient’s perspective, the attitude on electroconvulsive therapy, and informed consent. This short review refers to the international literature on ECT published since 2000. Analyses of the three previously listed topics are, in part, made within the context of Italian medical settings.

scholarly journals A qualitative investigation of lived experiences of long-term health condition management with people who are food insecure

2020 ◽  
Author(s):  
Flora Douglas ◽  
Emma MacIver ◽  
Chris Yuill
Keyword(s):  
Health Care ◽  
Food Insecurity ◽  
Health Condition ◽  
Health Conditions ◽  
Ethical Implications ◽  
North East ◽  
Increased Risk ◽  
The Uk ◽  
The Impact

Abstract Background: As more people are living with one or more chronic health conditions, supporting patients to become activated, self-managers of their conditions has become a key health policy focus both in the UK and internationally. There is also growing evidence in the UK that those with long term health conditions have an increased risk of being food insecure. While international evidence indicates that food insecurity adversely affects individual’s health condition management capability, little is known about how those so affected manage their condition(s) in this context. An investigation of lived experience of health condition management was undertaken with food insecure people living in north east Scotland. The study aimed to explore the challenges facing food insecure people in terms of, i. their self-care condition management practices, and ii. disclosing and discussing the experience of managing their condition with a health care professional, and iii. notions of the support they might wish to receive from them. Methods : Twenty in-depth interviews were conducted with individuals attending a food bank and food pantry in north east Scotland. Interview audio recordings were fully transcribed and thematically analysed.Results : Individuals reporting multiple physical and mental health conditions, took part in the study. Four main themes were identified i.e.: 1. food practices, trade-offs and compromises, that relate to economic constraints and lack of choice; 2. illness experiences and food as they relate to physical and mental ill-health; 3. (in)visibility of participants’ economic vulnerability within health care consultations; and 4. perceptions and expectations of the health care system.Conclusions : This study, the first of its kind in the UK, indicated that participants’ health condition management aspirations were undermined by the experience of food insecurity, and that their health care consultations in were, on the whole, devoid of discussions of those challenges. As such, the study indicated practical and ethical implications for health care policy, practice and research associated with the risk of intervention-generated health inequalities that were suggested by this study. Better understanding is needed about the impact of household food insecurity on existing ill health, wellbeing and health care use across the UK.

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