scholarly journals Digital Health in the Management of Pediatric Growth Hormone Therapy – 10 Years of Developments

2021 ◽  
Author(s):  
Ekaterina Koledova ◽  
Quentin Le Masne ◽  
Amalia Spataru ◽  
Merat Bagha ◽  
David Dixon
Keyword(s):  
Growth Hormone ◽  
Electronic Monitoring ◽  
Digital Health ◽  
Healthcare Providers ◽  
Growth Failure ◽  
Self Report ◽  
Personalized Care ◽  
Novel Technologies ◽  
Patient Support Program ◽  
Failure Conditions

Growth hormone administration is approved for use in a number of growth failure conditions in children. Optimal growth outcome requires continuous daily injections over many years, leading to problems of persistence and adherence with therapy. The easypod™ connect ecosystem enables electronic monitoring of injection and dose history, transmitted to a secure cloud database via the internet or cellular networks. Thus, healthcare providers can easily monitor adherence with therapy and be alerted to problems. The growlink™ patient app has been added to the ecosystem to provide solutions that can engage and educate patients and their families/caregivers. growlink™ also allows patients to self-report height and weight, enabling healthcare providers to track growth progression. The patient support program, TuiTek and the easypod™ Augmented Reality (AR) app are being developed within the ecosystem to support telehealth services, increase disease awareness and reduce therapy-related anxiety. easypod™ connect provides objective assessments of adherence, shown to be maintained at a high level over several years, and analyses showed that increased adherence was significantly associated with a better growth outcome. Studies have identified factors that influence persistence and adherence with GH therapy via the easypod™ connect ecosystem. These novel technologies are generating solutions that enable data-driven personalized care for children with growth disorders and optimize long-term clinical outcomes.

scholarly journals Investigating healthcare professionals’ views regarding the quality of provided healthcare services

2020 ◽  
Vol 13 (4) ◽  
pp. 38-50
Author(s):  
Agoritsa Koulouri
Keyword(s):  
Health Professionals ◽  
Healthcare Professionals ◽  
Healthcare Providers ◽  
Healthcare Services ◽  
Self Report ◽  
Cross Sectional ◽  
Personalized Care ◽  
Health And Social Care ◽  
The Way

Introduction: Quality in healthcare services means doing the right things, making continuous improvements in order to get the best results, being interested in satisfying both healthcare providers and recipients. Aim: To investigate the views of health professionals on the quality of the provided health and social care services. Methodology: A cross-sectional study was carried out on healthcare professionals working in public and private healthcare organizations in December 2017 and January 2018. In total, the study involved 155 healthcare professionals who answered 25 questions on the dimensions of quality and the way they perceive the quality of the provided healthcare to its recipients. Data were collected using a structured anonymous self-report questionnaire. Statistical analysis was performed with the SPSS 24.0 statistical package. Results: The majority of the sample was female (75%) with higher education (44.5%) holding a master’s or doctorate degree (45.2%). Participants (86%) consider integral to providing quality healthcare services a combination of appropriate patient care that was linked to a framework of continuous evaluation, control and improvement even after treatment ended. Furthermore, as healthcare quality characteristics are considered the healthcare professional’s satisfaction of their relationship with the user of the services regarding the amount of information provided to the later and the provision of personalized services (>80%). In addition, empathy of health professionals (82%), compliance with the standards and quality of procedures (68%) are qualitative parameters. Conclusions: The way healthcare professionals perceive the quality of customer/user interaction with healthcare services, empathy, personalized care and long-term utility are among the most important quality parameters of health services.

A free, open-source, offline digital health system for refugee care (Preprint)

2021 ◽  
Author(s):  
Henry Ashworth ◽  
Senan Ebrahim ◽  
Hassaan Ebrahim ◽  
Zahra Bhaiwala ◽  
Michael Chilazi
Keyword(s):  
Health Systems ◽  
Digital Health ◽  
Healthcare Providers ◽  
Lessons Learned ◽  
Extreme Weather Events ◽  
Mobile Clinic ◽  
Low Resource ◽  
Displaced Populations ◽  
Weather Events ◽  
Displaced People

BACKGROUND Rise of conflict, extreme weather events, and pandemics have led to larger displaced populations worldwide. Displaced populations have unique acute and chronic health needs that need to be met by low resource health systems. Electronic Health Records (EHRs) have been shown to improve health outcomes in displaced populations but need to be adapted to meet the constraints of these health systems. OBJECTIVE To describe the development and deployment of a EHR designed to care for displaced populations in low resource settings. METHODS Using a human-centered design approach we conducted in-depth interviews and focus groups with patients, healthcare providers, and administrators in Lebanon and Jordan to identify the essential EHR features. These features including modular workflows, multilingual interfaces, and offline-first capabilities led to the development of the Hikma Health EHR which has been deployed in Lebanon and Nicaragua. RESULTS We report the successes and challenges from 12 months of Hikma Health EHR deployment in a mobile clinic providing care to Syrian Refugees in the Bekaa Valley, Lebanon. Successes include the EHR’s ability to (1) increase clinical efficacy by providing detailed patient records, (2) prove adaptable to the threats of COVID-19, and (3) improve organizational planning. Lessons learned include technical fixes to methods of identifying patients through name or their medical record ID. CONCLUSIONS As the number of displaced people continues to rise globally, it is imperative that solutions are created to help maximize the healthcare they receive. Free, open-sourced and adaptable EHRs can enable organizations to better provide for displaced populations.

Foundations for Meaningful Consent in Canada’s Digital Health Ecosystem: Findings from a Pan-Canadian Survey (Preprint)

2021 ◽  
Author(s):  
Nelson Shen ◽  
Iman Kassam ◽  
Haoyu Zhao ◽  
Wei Wang ◽  
Sarah Wickham ◽  
...  
Keyword(s):  
Health Services ◽  
Information Needs ◽  
Digital Health ◽  
Healthcare Providers ◽  
Data Access ◽  
Patient Access ◽  
Access Channel ◽  
Patient Consent ◽  
Data Source ◽  
Healthcare Privacy

BACKGROUND Patients are increasingly gaining online access to digital health services and expect to access their data from various sources through a central patient access channel. For digital health services to connect and mutually share data, it is critical to understand patient consent preferences to meet the privacy needs of Canadians. Understanding user consent requirements and information needs is necessary in developing a trustworthy and transparent consent management system to support patient access channels. OBJECTIVE The objective of this study was to understand (1) data control preferences, (2) information needs for consent, and (3) how preferences and needs may vary by different user characteristics. METHODS A secondary analysis of a national survey was completed using a retrospective descriptive study design. The cross-sectional survey, conducted in October 2019, used a series of vignettes and consent scenarios to develop a deeper understanding of Canadians’ privacy perspectives and preferences for consent management. Non-parametric tests, and logistic regression analyses were conducted to identify differences and associations between the various factors. RESULTS Of the 1017 total responses, 70.4% (716/1017) of participants self-identified as potential users. Almost all (672/716, 93.8%) felt the ability to control their data was important, while 53.8% (385/716) believed an “all or none” control at data source level was adequate. Most users prefer new data sources to be accessible by healthcare providers (546/716, 76.3%) and delegated parties (389/716, 54.3%) by default. Users with positive healthcare privacy experiences were more likely than users with poor experiences to grant default access to healthcare providers (OR 2.78, 95%CI 1.34-5.74) and less likely to grant access to no-one (OR 0.31, 95%CI 0.14-0.72). From a list of nine information elements found in consent forms, users selected an average of 5.70 (SD 2.66) and 5.63 (SD 2.84) items to feel informed in consenting to data access by care partners, and commercial digital health service providers respectively. There were significant differences (p<0.05) in information needs between the scenarios. CONCLUSIONS Many survey participants would register and use a patient access channel and believe the ability to control data access is important, especially as it pertains to access by those outside their care. Positive healthcare experiences were a significant factor in this decision, signaling the importance of providing positive healthcare privacy experiences in both physical and digital environments. These findings suggest broad “all-or-none” approach by data source may be accepted; however, approximately one-fifth of users were unable to decide. Although vignettes were used to introduce the questions, this study showed that more context is required for users to make an informed decision. Understanding their information needs will be critical, as these needs varied with use case, highlighting the importance of prioritizing and tailoring information to enable meaningful consent.

Growth Hormone Improves Growth in Duchenne Muscular Dystrophy Boys with Steroid-Induced Growth Failure.

2010 ◽  
pp. OR35-6-OR35-6 ◽  
Author(s):  
MM Rutter ◽  
J Collins ◽  
JG Woo ◽  
SR Rose ◽  
H Sawnani ◽  
...  
Keyword(s):  
Growth Hormone ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Growth Failure

scholarly journals Development and Validation of a Prediction Rule for Growth Hormone Deficiency Without Need for Pharmacological Stimulation Tests in Children With Risk Factors

2021 ◽  
Vol 11 ◽  
Author(s):  
Florencia Clément ◽  
Romina P. Grinspon ◽  
Daniel Yankelevich ◽  
Sabrina Martín Benítez ◽  
María Carolina De La Ossa Salgado ◽  
...  
Keyword(s):  
Risk Factors ◽  
Growth Hormone ◽  
Anterior Pituitary ◽  
Growth Failure ◽  
Prediction Rule ◽  
Hormone Deficiency ◽  
Neonatal Hypoglycemia ◽  
Cranial Radiotherapy ◽  
Stimulation Tests ◽  
Sellar Tumor

IntroductionPractice guidelines cannot recommend establishing a diagnosis of growth hormone deficiency (GHD) without performing growth hormone stimulation tests (GHST) in children with risk factors, due to the lack of sufficient evidence.ObjectiveOur goal was to generate an evidence-based prediction rule to diagnose GHD in children with growth failure and clinically identifiable risk factors.MethodsWe studied a cohort of children with growth failure to build the prediction model, and a second, independent cohort to validate the prediction rule. To this end, we assessed the existence of: pituitary dysgenesis, midline abnormalities, (supra)sellar tumor/surgery, CNS infection, traumatic brain injury, cranial radiotherapy, chemotherapy, genetic GHD, pituitary hormone deficiencies, and neonatal hypoglycemia, cholestasis, or hypogenitalism. Selection of variables for model building was performed using artificial intelligence protocols. Specificity of the prediction rule was the main outcome measure in the validation set.ResultsIn the first cohort (n=770), the resulting prediction rule stated that a patient would have GHD if (s)he had: pituitary dysgenesis, or two or more anterior pituitary deficiencies, or one anterior pituitary deficiency plus: neonatal hypoglycemia or hypogenitalism, or diabetes insipidus, or midline abnormalities, or (supra)sellar tumor/surgery, or cranial radiotherapy ≥18 Gy. In the validation cohort (n=161), the specificity of the prediction rule was 99.2% (95% CI: 95.6–100%).ConclusionsThis clinical rule predicts the existence of GHD with high specificity in children with growth disorders and clinically identifiable risk factors, thus providing compelling evidence to recommend that GHD can be safely diagnosed without recurring to GHST in neonates and children with growth failure and specific comorbidities.

scholarly journals Associations Between Personality Traits and Adherence to Antidepressants Assessed Through Self-Report, Electronic Monitoring, and Pharmacy Dispensing Data

2016 ◽  
Vol 36 (5) ◽  
pp. 465-471 ◽  
Author(s):  
Hans Wouters ◽  
Darya F.H. Amin ◽  
Katja Taxis ◽  
Eibert R. Heerdink ◽  
Antoine C.G. Egberts ◽  
...  
Keyword(s):  
Personality Traits ◽  
Electronic Monitoring ◽  
Self Report ◽  
Pharmacy Dispensing Data ◽  
Dispensing Data

Defensive Medicine

2021 ◽  
pp. 99-124
Author(s):  
Michael J. Saks ◽  
Stephan Landsman
Keyword(s):  
Medical Practice ◽  
Real World ◽  
Healthcare Providers ◽  
Defensive Medicine ◽  
Self Report ◽  
Healthcare Industry ◽  
Clinical Scenario ◽  
Real World Data ◽  
Considerable Uncertainty ◽  
Legal Response

“Defensive Medicine: A Response to the Legal Response?” discusses the origins, meaning, purposes, and uncertain existence of defensive medicine. The concept has been most useful for those promoting changes in the law to economically benefit the healthcare industry. In the span of several decades, healthcare providers reversed their stance on whether or not they practice defensively. Why would providers commit defensive medicine? Why would they admit to practices that are universally seen as unethical, illegal (fraud), and unsound medical practice? Different types of empirical research have tried to determine whether defensive medicine occurs and, if so, its extent, cost, and effects on patients: physician self-report surveys, clinical scenario surveys, and multivariate analyses of real-world data. The chapter explores the possibility that defensive practices mostly occur in those situations where considerable uncertainty about diagnosis exists and the risk of serious harm is great if the patient is not treated correctly.

Adult growth hormone deficiency

2011 ◽  
pp. 152-165
Author(s):  
Aurora Aragon-Alonso ◽  
Mark Sherlock ◽  
Andrew A. Toogood
Keyword(s):  
Growth Hormone ◽  
Growth Hormone Deficiency ◽  
Replacement Therapy ◽  
Recombinant Human Growth Hormone ◽  
Hormone Replacement ◽  
Adult Life ◽  
Growth Failure ◽  
Clinical Syndrome ◽  
Hormone Deficiency ◽  
Recombinant Dna Technology

It has been known for many years that growth hormone is essential for normal linear growth, but over the past few years, with the advent of recombinant human growth hormone therapy, the importance of growth hormone during adult life has been described in detail. The growth hormone peptide was first isolated from bovine pituitaries in the 1940s (1), but was found to be species specific and inactive in humans. In 1956, growth hormone was extracted from human cadaveric pituitary tissue (2) and a year later was administered to a 13-year-old boy with hypopituitarism, resulting in an increased growth velocity (3). The first report suggesting growth hormone could have beneficial actions in adulthood was published in 1962 in which a 35-year-old woman with hypopituitarism reported increased vigour, ambition, and wellbeing after 2 months treatment with cadaveric growth hormone (4). However, the limited supply of pituitary-derived growth hormone confined its use to the treatment of children with severe growth failure caused by proven growth hormone deficiency (GHD). In 1985, the association of cadaveric growth hormone treatment with Creutzfeldt–Jakob disease led to its withdrawal from use worldwide (5). Since then, all growth hormone in clinical use has been produced using recombinant DNA technology. The first placebo-controlled trials of growth hormone replacement therapy in adults with GHD were published in 1989 (6, 7). These and subsequent studies have led to the recognition of adult GHD as a specific clinical syndrome and the impact of GHD and replacement therapy in adults with GHD has been studied in detail.

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