Investigating the Impact of the TUITEK® Patient Support Programme, Designed to Support Caregivers of Children Prescribed Recombinant Human Growth Hormone Treatment in Taiwan.

Purpose: Poor adherence to recombinant human growth hormone (r-hGH) treatment presents a significant barrier to achieving optimal growth outcomes. It is important to identify and address the treatment adherence-related needs of children prescribed r-hGH treatment, and develop new approaches to improve adherence. We aimed to measure the impact of the TUITEK® patient support programme, a multi-component personalized service intervention, on caregivers' knowledge, beliefs, and perceptions of short stature and adherence to its treatment. Patients and Methods: The evaluation of the TUITEK® patient support programme was conducted among 31 caregivers of children with short stature and receiving r-hGH treatment via the easypod™ auto-injector device in Taiwan. Caregivers within the 'high risk' category for knowledge, beliefs and perception factors influencing adherence to r-hGH treatment (disease and treatment coherence, emotional burden, self-administration, and treatment-related anxiety) were identified via the TUITEK® personalization questionnaire and followed up with bi-weekly telephone calls by a nurse practitioner over a 3-month period. A Wilcoxon signed-rank test was used to compare changes in questionnaire-based scoring patterns between baseline and follow-up. Results: Between baseline and follow-up, the percentage of caregivers scoring as 'high risk' for emotional burden reduced by 37%; there was an improvement in confidence of self-administration by 57% and the percentage of caregivers scoring as 'high risk' for treatment-related anxiety reduced by 52%. At follow-up, all caregivers classified as 'high risk' within the disease and treatment coherence item at baseline moved into the 'low risk' category. Statistically significant changes in questionnaire scores between baseline and follow-up for disease and treatment understanding, emotional burden, self-administration, and treatment-related anxiety were also observed. Conclusion: These findings indicate that the TUITEK® patient support programme can positively address disease and treatment-related barriers amongst caregivers regarding optimal adherence of their children to r-hGH treatment, which has the potential to positively impact on adherence levels and patient clinical health outcomes.

Long non-coding RNAs and their targets as potential biomarkers in breast cancer.

Breast cancer is among the lethal types of cancer with a high mortality rate, globally. Its high prevalence can be controlled through improved analysis and identification of disease-specific biomarkers. Recently, long non-coding RNAs (lncRNAs) have been reported as key contributors of carcinogenesis and regulate various cellular pathways through post-transcriptional regulatory mechanisms. The specific aim of this study was to identify the novel interactions of aberrantly expressed genetic components in breast cancer by applying integrative analysis of publicly available expression profiles of both lncRNAs and mRNAs. Differential expression patterns were identified by comparing the breast cancer expression profiles of samples with controls. Significant co-expression networks were identified through WGCNA analysis. WGCNA is a systems biology approach used to elucidate the pattern of correlation between genes across microarray samples. It is also used to identify the highly correlated modules. The results obtained from this study revealed significantly differentially expressed and co-expressed lncRNAs and their cis- and trans-regulating mRNA targets which include RP11-108F13.2 targeting TAF5L, RPL23AP2 targeting CYP4F3, CYP4F8 and AL022324.2 targeting LRP5L, AL022324.3, and Z99916.3, respectively. Moreover, pathway analysis revealed the involvement of identified mRNAs and lncRNAs in major cell signalling pathways, and target mRNAs expression is also validated through cohort data. Thus, the identified lncRNAs and their target mRNAs represent novel biomarkers that could serve as potential therapeutics for breast cancer and their roles could also be further validated through wet labs to employ them as potential therapeutic targets in future.

Designing a Personalized Digital Patient Support Program for Patients Treated With Growth Hormone: Key Design Considerations.

BACKGROUND: Recombinant human growth hormone treatment can optimize growth potential; however, optimal outcomes are not always achieved for several reasons, including poor adherence. The overall objective of this project was to design a patient support program to maximize the chances of treatment success for people being treated with somatropin injection. An approach known as the behavior change wheel was used to enhance the development of the patient support program. The behavior change wheel provided a comprehensive framework to support the design of interventions. OBJECTIVE: The aim of this paper was to describe how the steps of the behavior change wheel were applied to the development of a patient support program for individuals with growth hormone deficiency undergoing treatment with somatropin. METHODS: We followed a series of steps that align to tenets of the behavior change wheel, namely, a narrative literature review to identify which behaviors needed to change and the potential drivers of and barriers to the behaviors, the selection of an intervention strategy and discrete behavior change techniques, and, finally, intervention specification. RESULTS: A recent systematic review identified a range of potentially modifiable factors found to have an influence on patient adherence to growth hormone treatment. Insights from the systematic review were used to guide the development of a patient support program. The final design of the patient support program consisted of four elements: (1) a personalization questionnaire to tailor support for each individual, (2) tailored reminder and support SMS text messages, (3) nurse-led phone calls, and (4) Easypod connect, an automated electronic autoinjector drug-delivery device with a transmitter and connection platform for Saizen (somatropin) that allows automatic recording, storage, and transmission of drug-usage data, thus providing insight into suboptimal adherence. CONCLUSIONS: The patient support program that was designed is currently being piloted with patients to assess engagement with the program and determine its impact on patient outcomes. Results from the pilot will be used to further refine the program to ensure it meets user needs.

Meta-Analysis of miRNAs and Their Involvement as Biomarkers in Oral Cancers.

Oral Squamous Cell Carcinoma (OSCC) is one of the most common cancers worldwide. Recent studies have highlighted the role of miRNA in disease pathology, indicating its potential use as an early diagnostic marker. Dysregulated expression of miRNAs is known to affect cell growth, and these may function as tumor suppressors or oncogenes in various cancers. The main objective of this study was to characterize the extracellular miRNAs involved in oral cancer (OC) that can potentially be used as biomarkers of OC. A total of 318 miRNAs involved in oral carcinoma were shortlisted. Differentially expressed genes (DEGs) of oral carcinoma from reported experiments were identified. Common genes between lists of DEGs of OC of each miRNA were identified. These common genes are the targets of specific miRNA, which may be used as biomarkers of OC. A list of significant biomarkers for cancer was generated like CDH2 and CDK7, and functional enrichment analysis identified the role of miRNAs in major pathways like cell adhesion molecules pathway affected by cancer. We observed that at least 25 genes like ABCF3, ALDH2, CD163L1, and so forth are regulated by a maximum number of miRNAs; thereby, they can be used as biomarkers of OC.

Treatment Adherence in Type 1 Hereditary Tyrosinaemia (HT1): A Mixed-Method Investigation into the Beliefs, Attitudes and Behaviour of Adolescent Patients, Their Families and Their Health-Care Team.

BACKGROUND: Type 1 hereditary tyrosinaemia (HT1) is a rare metabolic disorder caused by an enzymatic defect in the metabolism of the amino acid tyrosine. Primary treatment for HT1 is nitisinone (Orfadin) in conjunction with a low-tyrosine/phenylalanine diet. The appropriate use of nitisinone medication and adhering to specialist diet is thus central to the successful management of HT1. OBJECTIVE: To date, no published research has examined adherence (to medication and diet) and factors that influence it in the context of HT1. This study aimed to ascertain the extent to which non-adherence is a problem in this patient population, identify perceived barriers and facilitators to treatment adherence and explore the role of illness beliefs and treatment perceptions in treatment management. METHODS: The present study used a combination of qualitative interviews and quantitative survey methods with patients, carers and health-care professionals (HCPs). RESULTS: This study found adherence to medication to be high amongst patients with HT1 and their carers who administer it. However, adherence to diet was reported to be much lower. A key factor influencing adherence to diet was age, with adolescents reported to have most difficulty adhering. CONCLUSIONS: The results indicate that adherence to dietary instructions becomes more problematic as children with HT1 grow older. Greater involvement in managing their condition and in their consultation at an early stage may have a positive impact on future adherence by increasing their investment and understanding of the treatment regime, potentially making adherence rates more stable and less influenced by moving through different life stages.

A systematic review of workplace health promotion interventions for increasing physical activity.

PURPOSE: The benefits of an active lifestyle are widely documented, yet studies show that only a small proportion of adults engage in sufficient levels of physical activity. The workplace presents an ideal avenue for delivering initiatives to promote physical activity, overcoming commonly cited barriers such as a 'lack of time' and providing access to a large intersection of society. The purpose of this study was to (1) explore the types of interventions workplaces implement to promote physical activity among staff, (2) describe the characteristics of those interventions, (3) understand whether these interventions positively impact on activity levels, and (4) assess the methodological quality of studies. METHODS: A systematic review of workplace physical activity interventions published up to April 2011 was conducted to identify types of interventions and their outcomes. RESULTS: Of the 58 studies included, the majority utilized health promotion initiatives. There were six physical activity/exercise interventions, 13 counselling/support interventions, and 39 health promotion messages/information interventions. Thirty-two of these studies showed a statistically significant increase in a measure of physical activity against a control group at follow-up. CONCLUSIONS: While the studies included in this review show some evidence that workplace physical activity interventions can be efficacious, overall the results are inconclusive. Despite the proliferation of research in this area, there is still a need for more well-designed studies to fully determine the effectiveness of workplace interventions for increasing physical activity and to identify the types of interventions that show the most promise.

The therapeutic potential of the internet: exploring self-help processes in an internet forum for young people with inflammatory bowel disease.

The Internet has provided new opportunities for young people with inflammatory bowel disease to access diverse information and support, and communicate with fellow sufferers through the means of online patient support groups. The study presented in this article is the first to examine communication processes in an online support group for young people with inflammatory bowel disease. The purpose of the study was to examine the frequency and use of self-help mechanisms in communication within the online group. Content analysis was performed on a sample of 1,505 messages posted to the online support group. Results revealed that similar to face-to-face support groups, the online group offered patients the opportunity to utilize a variety of self-help mechanisms. Specifically, the group seemed to provide a unique avenue through which participants could connect with other young people suffering from inflammatory bowel disease and share personal experiences and information related to their condition. These findings suggest that online support groups may provide a novel and beneficial medium through which young people with inflammatory bowel disease can fulfill their support needs, and those involved in their care, such as nurses, may play an important role in discussing the advantages or disadvantages of this increasingly popular form of support. Further research is needed to examine the psychosocial effects of accessing such groups.

'Do as say, but not as I do': are next generation nurses role models for health?

AIM: Promoting healthy lifestyles plays a key role in professional nursing yet nurses do not always practice what they preach. Efforts are currently being made to improve the health of NHS staff, yet little is known about the health and lifestyle behaviours of pre-registration nurses in the UK although these individuals are our next generation of NHS employees. The aim of this study was to investigate the health behaviours and wellbeing of pre-registration nurses based at an acute NHS teaching hospital in England. METHODS: In this cross-sectional questionnaire survey, 325 pre-registration nurses (50% response rate) completed a health and lifestyle questionnaire, measuring levels of physical activity, smoking and alcohol behaviour, dietary practices and general health. RESULTS: Age ranged from 19-53 years, and 96% of the sample was female. More than half of the sample did not meet public health recommendations for physical activity. Just under one-fifth were current smokers and over three-quarters did not consume five servings of fruit/vegetables per day. Two-thirds reported exceeding the recommended maximum daily alcohol intake and around one third were classified as either overweight or obese. Those who were physically inactive were less likely to report good general health, good dietary practices and more sleep, and were more likely to report cigarette smoking and alcohol consumption than their active counterparts. CONCLUSIONS: This study indicates that the health profile of pre-registration nurses is relatively poor, and that those who are sedentary engage in other negative lifestyle behaviours also. Despite significant education relating to health promotion and health behaviours of patients being targeted at pre-registered nurses, it seems that this knowledge is not always transferred to their own behaviour. There is a need for timely intervention to establish healthy lifestyle behaviours amongst nurses early in their career.

A comparison of lurkers and posters within infertility online support groups.

Current research shows that online support groups can offer people affected by infertility a unique and valuable source of social support. However, to date most research has focused on the experiences of people who post messages to online infertility support groups; in comparison, little is known about how "lurkers" (i.e., those individuals who read messages but do not post messages) use and benefit from online infertility support groups. The purpose of the present study was to compare the use and experience of online infertility support groups between lurkers and posters. A total of 295 participants who were recruited from several online infertility support groups completed an online questionnaire containing questions about their use and experience of online support groups and measures of loneliness, social support, marital satisfaction, and perceived infertility-related stress. Differences between lurkers and posters were analyzed using Mann-Whitney U and χ or Fisher exact tests. Results revealed that compared with posters, lurkers visited the online support groups less often and scored significantly lower in overall satisfaction with the online support group. However, both lurkers and posters reported gaining a range of unique benefits from access to an online support group. Furthermore, there were no significant differences in loneliness, social support, infertility-related stress, and marital satisfaction between lurkers and posters. These findings suggest that reading messages posted to online support groups may be as beneficial as interacting with the group.

How healthy are our nurses? New and registered nurses compared.

This study examined the health behaviour of nursing staff, comparing registered and pre-registered nurses in terms of their self-reported health and lifestyle behaviour. In total, 325 pre-registered nurses and 551 registered nurses, based at the same university teaching hospital and located within an acute NHS trust, completed a self-administered health and lifestyle questionnaire survey. With the exception of smoking behaviour, registered nurses generally had a healthier lifestyle compared with pre-registered nurses. However, when examining the overall health profile of the sample, the study reveals that there is room for improvement in the health and lifestyle behaviour exhibited by both registered and pre-registered nurses. Almost half of the sample failed to meet public health recommendations for levels of physical activity, almost two-thirds did not consume five portions of fruit or vegetables daily and almost half ate foods that were high in fat and sugar content on a daily basis. These findings are alarming given the current government emphasis on the health of NHS staff and the important role that nurses play in influencing lifestyle choices among their patients. There is an urgent need to target education and support services to improve the diet and exercise habits of nursing professionals.

'They all supported me but I felt like I suddenly didn't belong anymore': an exploration of perceived disadvantages to online support seeking.

In recent years, there has been a significant rise in the number of online support communities dedicated to issues surrounding infertility. The aim of this study was to focus on investigating the perceived disadvantages of online infertility support communities from the perspective of those who access and participate in them. A total of 295 participants completed an online questionnaire about their use of online support communities. Responses were analysed using inductive content analysis. Since the majority of respondents were women, the results of the study largely reflect the experiences of the female population. Over half of the sample (57.9%) reported experiencing disadvantages to online support. Content analysis revealed that the most commonly cited disadvantages were reading about negative experiences (10.9%), reading about other peoples pregnancies (8.8%), inaccurate information (7.8%) and its addictive (5.8%). These results suggest that there are many perceived disadvantages to online infertility support communities. While some of these disadvantages reflect fears commonly cited in the literature, there are also unique disadvantages associated with the experience of infertility and its treatment. The study highlights a number of important areas in which health professionals and community moderators could intervene to better support and improve the online experiences of patients experiencing infertility.

Coping with infertility online: an examination of self-help mechanisms in an online infertility support group.

OBJECTIVE: To examine communication within an online infertility support group. METHODS: A content analysis of 3500 messages posted to infertility bulletin boards. RESULTS: The most frequently used self-help mechanisms were support or empathy (45.5%) and sharing personal experiences (45.4%), followed by the provision of information and advice (15.9%), gratitude (12.5%), friendship (9.9%), chit-chat (9.4%), requests for information or advice (6.8%) and universality (4.8%), with negative statements (0.3%) and creative expressions (0.2%) being the least frequent categories. CONCLUSION: These findings suggest that online support groups can provide a viable alternative source of support for couples dealing with infertility. PRACTICE IMPLICATIONS: Health care professionals interested in developing online support interventions should look to tailor support resources to the specific needs of patients at different stages of the infertility journey.

Gender differences in computer-mediated communication: a systematic literature review of online health-related support groups.

OBJECTIVE: Previous research has contended that the unique characteristics of the Internet might remove some of the gender differences that exist in face-to-face healthcare. The aims of the present study were to systematically review studies that have examined gender differences in communication within online health communities. METHODS: A literature search was conducted to identify studies addressing gender differences in messages posted to online health-related support groups. Out of the 1186 articles identified, twelve were retrieved for review. RESULTS: Half of the studies examined gender differences by comparing male and female cancer discussion boards. The literature review revealed that some gender differences were observed in these studies. However, for studies that analysed mixed-gender communities, gender differences were less evident. CONCLUSION: Results seemed to reveal gender differences in communications in single-sex online health support groups, and similarities in communication patterns in mixed-sex online health support groups. However, findings should be treated with caution due to the diversity in studies and methodological issues highlighted in the present review. PRACTICE IMPLICATIONS: There is a need for health care professionals to take into account a range of situational and contextual factors that may affect how men and women use online health support groups. However, more robust research is needed before concrete guidelines can be developed to help health care professionals develop effective online support interventions.

Computer-mediated infertility support groups: an exploratory study of online experiences.

OBJECTIVE: Over recent years the Internet has become an increasingly popular source of support and information for infertility, with a growing number of online support groups now available to individuals affected by fertility problems. The aims of the present study were therefore to explore the online experiences of individuals accessing infertility support groups via the Internet. METHODS: Ninety-five participants who were recruited from several online infertility support groups completed an online questionnaire containing a series of open-ended questions. Responses to the open-ended questions were analysed using inductive thematic analysis. RESULTS: The thematic analysis revealed five recurrent themes, which were labelled: 'unique features of online social support', 'improved relationship with partner', 'reduced sense of isolation', 'information and empowerment', and 'negative aspects of online communities.' CONCLUSIONS: This study suggests that the majority of participants considered there to be a range of important benefits from accessing online communities. However the results also demonstrate that there are a number of disadvantages to online infertility support groups that may have an impact on the experiences of infertile individuals. PRACTICE IMPLICATIONS: Online support groups may provide a valuable forum through which health care professionals can better understand and support the psychosocial needs of individuals experiencing infertility.