Search results for: G. E. Gibson

Authors: Kim Kennedy, Daren Gibson, Stephanie Flukes, Chandra Diwakarla, Lisa Spalding, Leanne Pilkington, Andrew Redfern

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Introduction: Head and neck cancers (HNC) are often associated with the development of non-HNC primaries, as the risk factors that predispose patients to HNC are often risk factors for other cancers. Aim: We sought to evaluate whether there was an increased risk of smoking and alcohol-related cancers and also other cancers in HNC patients and to evaluate whether there is a difference between the rates of non-HNC primaries in Aboriginal compared with non-Aboriginal HNC patients. Methods: We performed a retrospective cohort analysis of 320 HNC patients from a single center in Western Australia, identifying 80 Aboriginal and 240 non-Aboriginal patients matched on a 1:3 ratio by sites, histology, rurality, and age. We collected data on the patient characteristics, tumour features, treatments, outcomes, and past and subsequent HNCs and non-HNC primaries. Results: In the overall study population, there were 86 patients (26.9%) with a metachronous or synchronous non-HNC primary. Non-HNC primaries were actually significantly more common in the non-Aboriginal population compared with the Aboriginal population (30% vs. 17.5%, p=0.02); however, half of these were patients with cutaneous squamous or basal cell carcinomas (cSCC/BCC) only. When cSCC/BCCs were excluded, non-Aboriginal patients had a similar rate as Aboriginal patients (16.7% vs. 15%, p=0.73). There were clearly more cSCC/BCCs in non-Aboriginal patients compared with Aboriginal patients (16.7% vs. 2.5%, p=0.001) and more patients with melanoma (2.5% vs. 0%, p value not significant (p=NS). Rates of most cancers were similar between non-Aboriginal and Aboriginal patients, including prostate (2.9% vs. 3.8%), colorectal (2.9% vs. 2.5%), kidney (1.2% vs. 1.2%), and these rates appeared comparable to Australian Age Standardised Incidence Rates (ASIR) in the general community. Oesophageal cancer occurred at double the rate in Aboriginal patients (3.8%) compared with non-Aboriginal patients (1.7%), which was far in excess of ASIRs which estimated a lifetime risk of 0.59% in the general population. Interestingly lung cancer rates did not appear to be significantly increased in our cohort, with 2.5% of Aboriginal patients and 3.3% of non-Aboriginal patients having lung cancer, which is in line with ASIRs which estimates a lifetime risk of 5% (by age 85yo). Interestingly the rate of Glioma in the non-Aboriginal population was higher than the ASIR, with 0.8% of non-Aboriginal patients developing Glioma, with Australian averages predicting a 0.6% lifetime risk in the general population. As these are small numbers, this finding may well be due to chance. Unsurprisingly, second HNCs occurred at an increased incidence in our cohort, in 12.5% of Aboriginal patients and 11.2% of non-Aboriginal patients, compared to an ASIR of 17 cases per 100,000 persons, estimating a lifetime risk of 1.70%. Conclusions: Overall, 26.9% of patients had a non-HNC primary. When cSCC/BCCs were excluded, Aboriginal and non-Aboriginal patients had similar rates of non-HNC primaries, although non-Aboriginal patients had a significantly higher rate of cSCC/BCCs. Aboriginal patients had double the rate of oesophageal primaries; however, this was not statistically significant, possibly due to small case numbers.

Keywords: head and neck cancer, synchronous and metachronous primaries, other primaries, Aboriginal

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Authors: Heba Salama, Barry Gibson, Jennifer Burr

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Introduction: It is often argued that better oral health leads to better wellbeing, and the goal of dental care is to improve wellbeing. Notwithstanding, to our best knowledge, there is a lack of evidence to support the relationship between oral health and wellbeing. Aim: The scoping review aims to examine current definitions of health and wellbeing as well as map the evidence to examine the relationship between oral health and wellbeing. Methods: The scoping review followed the Preferred Reporting Items for Systematic Reviews Extension for Scoping Review (PRISMA-ScR). A two-phase search strategy was followed because of the unmanageable number of hits returned. The first phase was to identify how well-being was conceptualised in oral health literacy, and the second phase was to search for extracted keywords. The extracted keywords were searched in four databases: PubMed, CINAHL, PsycINFO, and Web of Science. To limit the number of studies to a manageable amount, the search was limited to the open-access studies that have been published in the last five years (from 2018 to 2022). Results: Only eight studies (0.1%) of the 5455 results met the review inclusion criteria. Most of the included studies defined wellbeing based on the hedonic theory. And the Satisfaction with Life Scale is the most used. Although the research results are inconsistent, it has generally been shown that there is a weak or no association between oral health and wellbeing. Interpretation: The review revealed a very important point about how oral health literature uses loose definitions that have significant implications for empirical research. That results in misleading evidence-based conclusions. According to the review results, improving oral health is not a key factor in improving wellbeing. It appears that investing in oral health care to improve wellbeing is not a top priority to tell policymakers about. This does not imply that there should be no investment in oral health care to improve oral health. That could have an indirect link to wellbeing by eliminating the potential oral health-related barriers to quality of life that could represent the foundation of wellbeing. Limitation: Only the most recent five years (2018–2022), peer-reviewed English-language literature, and four electronic databases were included in the search. These restrictions were put in place to keep the volume of literature at a manageable level. This suggests that some significant studies might have been omitted. Furthermore, the study used a definition of wellbeing that is currently being evolved and might not everyone agrees with it. Conclusion: Whilst it is a ubiquitous argument that oral health is related to wellbeing, and this seems logical, there is little empirical evidence to support this claim. This question, therefore, requires much more detailed consideration. Funding: This project was funded by the Ministry of Higher Education and Scientific Research in Libya and Tripoli University.

Keywords: oral health, wellbeing, satisfaction, emotion, quality of life, oral health related quality of life

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Authors: Kim Kennedy, Daren Gibson, Stephanie Flukes, Chandra Diwakarla, Lisa Spalding, Leanne Pilkington, Andrew Redfern

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Introduction: Head and neck cancer and treatments are known for their profound effect on nutrition and tube feeding is a common requirement to maintain nutrition. Aim: We aimed to evaluate the frequency of tube feeding in Aboriginal and non-Aboriginal patients, and to examine the relapse and survival outcomes in patients who require enteral tube feeding. Methods: We performed a retrospective cohort analysis of 320 head and neck cancer patients from a single centre in Western Australia, identifying 80 Aboriginal patients and 240 non-Aboriginal patients matched on a 1:3 ratio by site, histology, rurality, and age. Data collected included patient demographics, tumour features, treatment details, and cancer and survival outcomes. Results: Aboriginal and non-Aboriginal patients required feeding tubes at similar rates (42.5% vs 46.2% respectively), however Aboriginal patients were far more likely to fail to return to oral nutrition, with 26.3% requiring long-term tube feeding versus only 15% of non-Aboriginal patients. In the overall study population, 27.5% required short-term tube feeding, 17.8% required long-term enteral tube nutrition, and 45.3% of patients did not have a feeding tube at any point. Relapse was more common in patients who required tube feeding, with relapses in 42.1% of the patients requiring long-term tube feeding, 31.8% in those requiring a short-term tube, versus 18.9% in the ‘no tube’ group. Survival outcomes for patients who required a long-term tube were also significantly poorer when compared to patients who only required a short-term tube, or not at all. Long-term tube-requiring patients were half as likely to survive (29.8%) compared to patients requiring a short-term tube (62.5%) or no tube at all (63.5%). Patients requiring a long-term tube were twice as likely to die with active disease (59.6%) as patients with no tube (28%), or a short term tube (33%). This may suggest an increased relapse risk in patients who require long-term feeding, due to consequences of malnutrition on cancer and treatment outcomes, although may simply reflect that patients with recurrent disease were more likely to have longer-term swallowing dysfunction due to recurrent disease and salvage treatments. Interestingly long-term tube patients were also more likely to die with no active disease (10.5%) (compared with short-term tube requiring patients (4.6%), or patients with no tube (8%)), which is likely reflective of the increased mortality associated with long-term aspiration and malnutrition issues. Conclusions: Requirement for tube feeding was associated with a higher rate of cancer relapse, and in particular, long-term tube feeding was associated with a higher likelihood of dying from head and neck cancer, but also a higher risk of dying from other causes without cancer relapse. This data reflects the complex effect of head and neck cancer and its treatments on swallowing and nutrition, and ultimately, the effects of malnutrition, swallowing dysfunction, and aspiration on overall cancer and survival outcomes. Tube feeding was seen at similar rates in Aboriginal and non-Aboriginal patient, however failure to return to oral intake with a requirement for a long-term feeding tube was seen far more commonly in the Aboriginal population.

Keywords: head and neck cancer, enteral tube feeding, malnutrition, survival, relapse, aboriginal patients

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Authors: Christine P. Gibson, Ramona Alex, Michael Farney, Johana Vallejo-Elias, Mitra Esfandiarei

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Aortic aneurysm is the leading cause of death in Marfan syndrome (MFS), a connective tissue disorder caused by mutations in fibrillin-1 gene (FBN1). MFS aneurysm is characterized by weakening of the aortic wall due to elastin fibers fragmentation and disorganization. The above-average height and distinct physical features make young adults with MFS desirable candidates for competitive sports; but little is known about the exercise limit at which they will be at risk for aortic rupture. On the other hand, aerobic cardiovascular exercise has been shown to have protective effects on the heart and aorta. We have previously reported that mild aerobic exercise can delay the formation of aortic aneurysm in a mouse model of MFS. In this study, we aimed to investigate the effects of various levels of exercise intensity on the progression of aortic aneurysm in the mouse model. Starting at 4 weeks of age, we subjected control and MFS mice to different levels of exercise intensity (8m/min, 10m/min, 15m/min, and 20m/min, corresponding to 55%, 65%, 75%, and 85% of VO2 max, respectively) on a treadmill for 30 minutes per day, five days a week for the duration of the study. At 24 weeks of age, aortic tissue were isolated and subjected to structural and functional studies using histology and wire myography in order to evaluate the effects of different exercise routines on elastin fragmentation and organization and aortic wall elasticity/stiffness. Our data shows that exercise training at the intensity levels between 55%-75% significantly reduces elastin fragmentation and disorganization, with less recovery observed in 85% MFS group. The reversibility of elasticity was also significantly restored in MFS mice subjected to 55%-75% intensity; however, the recovery was less pronounced in MFS mice subjected to 85% intensity. Furthermore, our data shows that smooth muscle cells (SMCs) contractilion in response to vasoconstrictor agent phenylephrine (100nM) is significantly reduced in MFS aorta (54.84 ± 1.63 mN/mm2) as compared to control (95.85 ± 3.04 mN/mm2). At 55% of intensity, exercise did not rescue SMCs contraction (63.45 ± 1.70 mN/mm2), while at higher intensity levels, SMCs contraction in response to phenylephrine was restored to levels similar to control aorta [65% (81.88 ± 4.57 mN/mm2), 75% (86.22 ± 3.84 mN/mm2), and 85% (83.91 ± 5.42 mN/mm2)]. This study provides the first time evidence that high intensity exercise (e.g. 85%) may not provide the most beneficial effects on aortic function (vasoconstriction) and structure (elastin fragmentation, aortic wall elasticity) during the progression of aortic aneurysm in MFS mice. On the other hand, based on our observations, medium intensity exercise (e.g. 65%) seems to provide the utmost protective effects on aortic structure and function in MFS mice. These findings provide new insights into the potential capacity, in which MFS patients could participate in various aerobic exercise routines, especially in young adults affected by cardiovascular complications particularly aortic aneurysm. This work was funded by Midwestern University Research Fund.

Keywords: aerobic exercise, aortic aneurysm, aortic wall elasticity, elastin fragmentation, Marfan syndrome

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Authors: S. Alina Wang

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A Gibsonian approach is used to understand the existential dimensions of the human ecological niche. Then, this existential-Gibsonian framework is applied to rethinking Hacking’s historical analysis of multiple personality disorder. This research culminates in a generalized account of psychiatric illness from an enactivist lens. In conclusion, reflections on the implications of this account on approaches to psychiatric treatment are mentioned. J.J. Gibson’s theory of affordances centered on affordances of sensorimotor varieties, which guide basic behaviors relative to organisms’ vital needs and physiological capacities (1979). Later theorists, notably Neisser (1988) and Rietveld (2014), expanded on the theory of affordances to account for uniquely human activities relative to the emotional, intersubjective, cultural, and narrative aspects of the human ecological niche. This research shows that these affordances are structured by what Haugeland (1998) calls existential commitments, which draws on Heidegger’s notion of dasein (1927) and Merleau-Ponty’s account of existential freedom (1945). These commitments organize the existential affordances that fill an individual’s environment and guide their thoughts, emotions, and behaviors. This system of a priori existential commitments and a posteriori affordances is called existential enactivism. For humans, affordances do not only elicit motor responses and appear as objects with instrumental significance. Affordances also, and possibly primarily, determine so-called affective and cognitive activities and structure the wide range of kinds (e.g., instrumental, aesthetic, ethical) of significances of objects found in the world. Then existential enactivism is applied to understanding the psychiatric phenomenon of multiple personality disorder (precursor of the current diagnosis of dissociative identity disorder). A reinterpretation of Hacking’s (1998) insights into the history of this particular disorder and his generalizations on the constructed nature of most psychiatric illness is taken on. Enactivist approaches sensitive to existential phenomenology can provide a deeper understanding of these matters. Conceptualizing psychiatric illness as strictly a disorder in the head (whether parsed as a disorder of brain chemicals or meaning-making capacities encoded in psychological modules) is incomplete. Rather, psychiatric illness must also be understood as a disorder in the world, or in the interconnected networks of existential affordances that regulate one’s emotional, intersubjective, and narrative capacities. All of this suggests that an adequate account of psychiatric illness must involve (1) the affordances that are the sources of existential hindrance, (2) the existential commitments structuring these affordances, and (3) the conditions of these existential commitments. Approaches to treatment of psychiatric illness would be more effective by centering on the interruption of normalized behaviors corresponding to affordances targeted as sources of hindrance, the development of new existential commitments, and the practice of new behaviors that erect affordances relative to these reformed commitments.

Keywords: affordance, enaction, phenomenology, psychiatry, psychopathology

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Authors: J. Hash, J. Converse, L. Gibson

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Plant medicines are of growing interest for addressing mental health concerns. Ayahuasca, a traditional plant-based medicine, has established itself as a powerful way of processing trauma and precipitating healing and mood stabilization. Eye Movement Desensitization and Reprocessing (EMDR) is another treatment modality that aids in the rapid processing and resolution of trauma. We investigated group EMDR therapy, G-TEP, as a preparatory practice before Ayahuasca ceremonies to determine if the combination of these modalities supports participants in their journeys of letting go of past experiences negatively impacting mental health, thereby accentuating the healing of the plant medicine. We surveyed 96 participants (51 experimental G-TEP, 45 control grounding prior to their ceremony; age M=38.6, SD=9.1; F=57, M=34; white=39, Hispanic/Latinx=23, multiracial=11, Asian/Pacific Islander=10, other=7) in a pre-post, mixed methods design. Participants were surveyed for demographic characteristics, symptoms of PTSD and cPTSD (International Trauma Questionnaire (ITQ), depression (Beck Depression Inventory, BDI), and stress (Perceived Stress Scale, PSS) before the ceremony and at the end of the ceremony weekend. Open-ended questions also inquired about their expectations of the ceremony and results at the end. No baseline differences existed between the control and experimental participants. Overall, participants reported a decrease in meeting the threshold for PTSD symptoms (p<0.01); surprisingly, the control group reported significantly fewer thresholds met for symptoms of affective dysregulation, 2(1)=6.776, p<.01, negative self-concept, 2 (1)=7.122, p<.01, and disturbance in relationships, 2 (1)=9.804, p<.01, on subscales of the ITQ as compared to the experimental group. All participants also experienced a significant decrease in scores on the BDI, t(94)=8.995, p<.001, and PSS, t(91)=6.892, p<.001. Similar to patterns of PTSD symptoms, the control group reported significantly lower scores on the BDI, t(65.115)=-2.587, p<.01, and a trend toward lower PSS, t(90)=-1.775, p=.079 (this was significant with a one-sided test at p<.05), compared to the experimental group following the ceremony. Qualitative interviews among participants revealed a potential explanation for these relatively higher levels of depression and stress in the experimental group following the ceremony. Many participants reported needing more time to process their experience to gain an understanding of the effects of the Ayahuasca medicine. Others reported a sense of hopefulness and understanding of the sources of their trauma and the necessary steps to heal moving forward. This suggests increased introspection and openness to processing trauma, therefore making them more receptive to their emotions. The integration process of an Ayahuasca ceremony is a week- to months-long process that was not accessible in this stage of research, yet it is an integral process to understanding the full effects of the Ayahuasca medicine following the closure of a ceremony. Our future research aims to assess participants weeks into their integration process to determine the effectiveness of EMDR, and if the higher levels of depression and stress indicate the initial reaction to greater awareness of trauma and receptivity to healing.

Keywords: ayahuasca, EMDR, PTSD, mental health

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Authors: Modi Alsubaie, Chris Dickens, Barnaby Dunn, Andy Gibson, Obioha Ukoumunned, Alison Evans, Rachael Vicary, Manish Gandhi, Willem Kuyken

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Background: Depression co-occurs in 20% of people with cardiovascular disorders, can persist for years and predicts worse physical health outcomes. While psychosocial treatments have been shown to effectively treat acute depression in those with comorbid cardiovascular disorders, to date there has been no evaluation of approaches aiming to prevent relapse and treat residual depression symptoms in this group. Therefore, the current study aimed to examine the feasibility and acceptability of a randomised controlled trial design evaluating an adapted version of mindfulness-based cognitive therapy (MBCT) designed specifically for people with co-morbid depression and cardiovascular disorders. Methods: A 3-arm feasibility randomised controlled trial was conducted, comparing MBCT adapted for people with cardiovascular disorders plus treatment as usual (TAU), mindfulness-based stress reduction (MBSR) plus TAU, and TAU alone. Participants completed a set of self-report measures of depression severity, anxiety, quality of life, illness perceptions, mindfulness, self-compassion and affect and had their blood pressure taken immediately before, immediately after, and three months following the intervention. Those in the adapted-MBCT arm additionally underwent a qualitative interview to gather their views about the adapted intervention. Results: 3400 potentially eligible participants were approached when attending an outpatient appointment at a cardiology clinic or via a GP letter following a case note search. 242 (7.1%) were interested in taking part, 59 (1.7%) were screened as being suitable, and 33 (<1%) were eventually randomised to the three groups. The sample was heterogeneous in terms of whether they reported current depression or had a history of depression and the time since the onset of cardiovascular disease (one to 25 years). Of 11 participants randomised to adapted MBCT seven completed the full course, levels of home mindfulness practice were high, and positive qualitative feedback about the intervention was given. Twenty-nine out of 33 participants randomised completed all the assessment measures at all three-time points. With regards to the primary outcome (depression), five out of the seven people who completed the adapted MBCT and three out of five under MBSR showed significant clinical change, while in TAU no one showed any clinical change at the three-month follow-up. Conclusions: The adapted MBCT intervention was feasible and acceptable to participants. However, aspects of the trial design were not feasible. In particular, low recruitment rates were achieved, and there was a high withdrawal rate between screening and randomisation. Moreover, the heterogeneity in the sample was high meaning the adapted intervention was unlikely to be well tailored to all participants needs. This suggests that if the decision is made to move to a definitive trial, study recruitment procedures will need to be revised to more successfully recruit a target sample that optimally matches the adapted intervention.

Keywords: mindfulness-based cognitive therapy (MBCT), depression, cardiovascular disorders, feasibility, acceptability

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Authors: Dr Grace Scaplehorn, Mr Muhammad Adeel Akhtar, Dr Jane Gibson

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Background: Canoe Slalom entails the skilful navigation of a carbon composite canoe or kayak through a series of 18-25 hanging gates, strategically positioned along the course, either upstream or downstream, amidst currents of whitewater rapids in natural and man-made river settings. Athletes compete individually in timed trials, competing for the fastest course time, typically around 80 to 120 seconds. In the new discipline of Kayak Cross, descents of the course are initiated by groups of four athletes freefalling simultaneously from a starting platform situated 3m above the river. Kayak Cross athletes, in contrast to Canoe Slalom, can make physical contact with suspended gates without incurring time penalties and are required to perform a kayak roll half way down the course. The Canoe Slalom World Championships were held at Lee Valley Whitewater Centre, London, from 19th to 24th September 2023. The event comprised 299 international athletes competing for 10 World Championship titles in Canoe/Kayak Slalom events (Olympic Debut Munich 1972), and the new Kayak Cross discipline (Olympic Debut Paris 2024). The inaugural appearance of Kayak Cross at the World Championships occurred in 2017, in Pau, France. There is limited literature surrounding Kayak Cross and the incidence of athlete injuries compared to traditional Canoe Slalom, hence it was felt important to undertake this review to address the perception that the event is dangerous. Aim: The study aimed to quantify and collate data collected from athletes presenting to the event medical centre. Methods: Athletes’ details were collected at initial assessments from the start of the practice period (16th–18th September) and throughout the event. Demographics such as age, sex and nationality were recorded along with presenting complaints, treatment, medication administered and outcome. Specifically, injuries were then sub-classified into body regions. The data does not include athletes who sought medical attention from their own governing body’s medical team. Results: During the 8-day period, there were 11 individual presentations to the medical centre, 3.7% of the athlete population (n=299). The mean age was 23.9 years (n=7), 6 were male (n=10). The most common presentation was minor injury (n=9), with 6 being musculoskeletal and 3 comprising skin damage, followed by insect sting/allergy (n=1) and pain relief requests (n=1). Five presentations were event-related, all being musculoskeletal injuries; 2 shoulder/arm, 1 head/neck, 1 hand/wrist and 1 other (data was not recorded). Of these injuries, the only intervention was 2 cases of 400mg Ibuprofen, which was given to both shoulder/arm injuries. Four of the 11 presentations were pre-existing injuries, which had been exacerbated due to increased intensity of practice. Two patients were advised to return for review, with 100% compliance. There were no unplanned re-presentations, and no emergency transfers to secondary care. Both the Kayak Cross and Canoe Slalom competitions resulted in 1 new event-related athlete presentation each. Conclusion: The event resulted in a negligible incidence of presentations at the medical centre, for both Kayak Cross and Canoe Slalom. This data holds significance in informing risk assessments and medical protocols necessary for the organisation of canoe slalom events.

Keywords: canoe slalom, kayak cross, athlete injuries, event injuries

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Authors: Pippa Sipanoun, Jo Wray, Kate Oulton, Faith Gibson

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Background: With rapidly evolving digital health innovation, there is a need for digital health transformation that is accessible and sustainable, that demonstrates utility for all stakeholders while maintaining data safety. Great Ormond Street Hospital for Children aimed to future-proof the hospital by transitioning to an electronic patient record (EPR) system with a tethered patient portal (MyGOSH) in April 2019. MyGOSH patient portal enables patients 12 years or older (with their parent's consent) to access their digital health data. This includes access to results, documentation, and appointments that facilitate communication with their care team. As part of the Going Digital Study conducted between 2018-2021, data were collected from a sample of all relevant stakeholders before and after EPR and MyGOSH implementation. Data collection reach was wide and included the hospital legal and ethics teams. Aims: This study aims to understand the ethical and legal implications of young people and their parents accessing their digital health data. Methods: A focus group was conducted. Recruited participants were members of the Great Ormond Street Hospital Paediatric Bioethics Centre. Participants included expert and lay members from the Committee from a variety of professional or academic disciplines. Written informed consent was provided by all participants (n=7). The focus group was recorded, transcribed verbatim, and analyzed using thematic analysis. Results: Six themes were identified: access, competence and capacity - granting access to the system; inequalities in access resulting in inequities; burden, uncertainty and responding to change - managing expectations; documenting, risks and data safety; engagement, empowerment and understanding – how to use and manage personal information; legal considerations and obligations. Discussion: If healthcare professionals are to empower young people to be more engaged in their care, the importance of including them in decisions about their health is paramount, especially when they are approaching the age of becoming the consenter for treatment. Complexities exist in assessing competence or capacity when granting system access, when disclosing sensitive information, and maintaining confidentiality. Difficulties are also present in managing clinician burden, managing user expectations whilst providing an equitable service, and data management that meets professional and legal requirements. Conclusion: EPR and tethered-portal implementation at Great Ormond Street Hospital for Children was not only timely, due to the need for a rapid transition to remote consultations during the COVID-19 pandemic, which would not have been possible had EPR/MyGOSH not been implemented, but also integral to the digital health revolution required in healthcare today. This study is highly relevant in understanding the complexities around young people and their parents accessing their digital health data and, although the focus of this research related to portal use and access, the findings translate to young people in the wider digital health context. Ongoing support is required for all relevant stakeholders following MyGOSH patient portal implementation to navigate the ethical and legal complexities. Continued commitment is needed to balance the benefits and burdens, promote inclusion and equity, and ensure portal utility for patient benefit, whilst maintaining an individualized approach to care.

Keywords: patient portal, young people and their parents, ethical, legal

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