19 research outputs found

    Psychological impact of comprehensive tumor genomic profiling results for advances cancer patients

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    Objective Comprehensive tumor genomic profiling (CTGP) is increasingly used to personalize treatments, providing hope, but potentially disappointment, for patients. We explored psychological outcomes in patients with advanced, incurable cancer, after receiving CTGP results. Methods Participants with advanced, incurable cancer (n = 560, mean age 56, 43% university educated) in this longitudinal substudy of the Molecular Screening and Therapeutics Program (MoST), completed questionnaires before and after receiving CGP results. MoST participants, recruited from Australian oncology clinics, undergo CTGP, and if there are actionable findings, are offered treatment in a related therapeutic trial if available. Results Patients who received actionable results, (n = 356, 64%) had lower gene-related distress (MICRA) (p \u3c 0.001) and Impact of Events scores (p = 0.039) than patients with non-actionable results. Those with actionable results offered ensured access to tailored treatment (n = 151) reported lower anxiety (p = 0.002) and depressive symptoms (p = 0.01) and greater hope (p = 0.002) than those not offered. Positive attitudes towards uncertainty and higher self-efficacy for coping with results were associated with lower psychological distress and uncertainty, and higher hope and satisfaction with the decision to have CTGP (ps=0.001–0.047). Those with higher knowledge reported greater anxiety (p = 0.034). Conclusion Receiving a non-actionable CTGP result, or an actionable result without ensured access to treatment, may cause increased distress in advanced cancer patients. Coping style was also associated with distress. Practice implications Pre-testing assessment and counseling addressing attitudes toward uncertainty and self-efficacy, and post-CTGP result support for patients receiving a non-actionable result or who receive an actionable results without ensured access to treatment, may benefit patients

    Advanced cancer patient preferences for receiving molecular profiling results

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    Objective: This study aimed to discern preferences for receiving somatic molecular profiling (MP) results in cancer patients who have given consent to undergo testing. Methods: We conducted a mixed‐methods study to explore patients’ views on which MP results they would like to receive and why. Advanced cancer patients (n=1299) completed questionnaires after giving consent to participate in a parent genomics study and undergoing MP. A subset of patients (n=20) participated in qualitative interviews. Results: Almost all (96%) participants were interested in receiving results which would direct cancer treatment (i.e. were actionable). A smaller majority wanted to access results which were not actionable (64%) or were variants of unknown significance (60%). Most (86%) were interested in finding out about germline findings, though not as a priority. Themes identified in interview data were: 1) Cancer is the focus; 2) Trust in clinicians; and 3) Respect for a right not to know. Conclusions: The majority of advanced cancer patients undergoing MP prioritised results which would lead to treatment options. They trusted their oncologists to help them navigate the results return process. While there was interest in knowing about other results, this was a lesser priority. Nevertheless, given high levels of interest in receiving all results, ethical aspects of not providing uninformative results requires further research, including a consideration of patient rationales for desiring this information and what health professionals can and should do to support patients in the absence of meaningful information being available. This article is protected by copyright. All rights reserved

    Psychosocial Functioning in the Elderly: An Assessment of Self-concept and Depression

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    The aim of this study was to explore the relationship between self-concept and depression in elderly people living in Residential Aged Care (RAC) settings. Forty-five residents, comprising 17 males and 28 females (M = 82.64 years, SD = 8.38 years), were recruited from 10 low-care, RAC facilities in Melbourne, Australia. Participants completed the Geriatric Depression Scale – Short Form and the Tennessee Self Concept Scale: 2. The results revealed that all self-concept domains were significantly lower in RAC residents in comparison to norms drawn from community dwelling samples (p < 0.05). Moreover, a significant inverse relationship between depression and self-concept domains (p < 0.05) was observed in RAC residents, with 28.8% of the variance in depression scores accounted for by Physical Self Concept. These findings identify self-concept, particularly physical self-concept, as an important predictor of psychosocial well-being in elderly RAC residents. Further research is needed to examine the efficacy of psychosocial and rehabilitative interventions to optimise self-concept in RAC residents.El objetivo de este estudia fue explorar la relación entre el autoconcepto y la depresión en las personas de edad avanzada que residen en residencias destinadas al cuidado de este tipo de personas. Cuarenta y cinco residentes de esta clase de residencias de bajo cuidado en Melbourne, Australia, 17 hombres y 28 mujeres, (M = 82.64 años, SD = 8.38 años) fueron incluidos. Los participantes completaron la forma corta de la escala de depresión geriátrica y la escala de autoconcepto de Tennessee: 2. Los resultados revelaron que todos los ítems relacionados al autoconcepto fueron significativamente bajos en las residencias mencionadas en comparación a las medias de muestras de habitantes de casas particulares (p < 0.05). Además, una relación inversa y significativa entre la depresión y el autoconcepto (p < 0.05) fue observado en los residentes del primer tipo de vivienda mencionada, con un 28.8% de varianza en los puntajes de depresión obtenidos para el autoconcepto físico. Estos hallazgos identifican el autoconcepto, particularmente el físico, como un importante síntoma de bienestar psicológico en los adultos mayores de residencias especiales destinadas a su cuidado. Es necesaria investigación posterior para examinar la eficacia de las intervenciones de rehabilitación y psicosociales para optimizar el autoconcepto en este tipo de población

    Funcionamiento psicosocial en los ancianos: una evaluación del autoconcepto y la depresión

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    The aim of this study was to explore the relationship between self-concept and depression in elderly people living in Residential Aged Care (RAC) settings. Forty-five residents, comprising 17 males and 28 females (M = 82.64 years, SD = 8.38 years), were recruited from 10 low-care, RAC facilities in Melbourne, Australia. Participants completed the Geriatric Depression Scale – Short Form and the Tennessee Self Concept Scale: 2. The results revealed that all self-concept domains were significantly lower in RAC residents in comparison to norms drawn from community dwelling samples (p &lt; 0.05). Moreover, a significant inverse relationship between depression and self-concept domains (p &lt; 0.05) was observed in RAC residents, with 28.8% of the variance in depression scores accounted for by Physical Self Concept. These findings identify self-concept, particularly physical self-concept, as an important predictor of psychosocial well-being in elderly RAC residents. Further research is needed to examine the efficacy of psychosocial and rehabilitative interventions to optimise self-concept in RAC residents.El objetivo de este estudia fue explorar la relación entre el autoconcepto y la depresión en las personas de edad avanzada que residen en residencias destinadas al cuidado de este tipo de personas. Cuarenta y cinco residentes de esta clase de residencias de bajo cuidado en Melbourne, Australia, 17 hombres y 28 mujeres, (M = 82.64 años, SD = 8.38 años) fueron incluidos. Los participantes completaron la forma corta de la escala de depresión geriátrica y la escala de autoconcepto de Tennessee: 2. Los resultados revelaron que todos los ítems relacionados al autoconcepto fueron significativamente bajos en las residencias mencionadas en comparación a las medias de muestras de habitantes de casas particulares (p &lt; 0.05). Además, una relación inversa y significativa entre la depresión y el autoconcepto (p &lt; 0.05) fue observado en los residentes del primer tipo de vivienda mencionada, con un 28.8% de varianza en los puntajes de depresión obtenidos para el autoconcepto físico. Estos hallazgos identifican el autoconcepto, particularmente el físico, como un importante síntoma de bienestar psicológico en los adultos mayores de residencias especiales destinadas a su cuidado. Es necesaria investigación posterior para examinar la eficacia de las intervenciones de rehabilitación y psicosociales para optimizar el autoconcepto en este tipo de población

    Step Differences Between the Two Groups Over Time

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    Lattice Graph: Step Differences Between the Two Groups Over Tim

    Data from: Beyond novelty effect: a mixed-methods exploration into the motivation for long-term activity tracker use

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    Objectives: Activity trackers hold the promise to support people in managing their health through quantified measurements about their daily physical activities. Monitoring personal health with quantified activity tracker-generated data provides patients with an opportunity to self-manage their health. Many activity tracker user studies have been conducted within short time frames, however, which makes it difficult to discover the impact of the activity tracker’s novelty effect or the reasons for the device’s long-term use. This study explores the impact of novelty effect on activity tracker adoption and the motivation for sustained use beyond the novelty period. Materials and Methods: This study uses a mixed-methods approach that combines both quantitative activity tracker log analysis and qualitative one-on-one interviews to develop a deeper behavioral understanding of 23 Fitbit device users who have used their trackers for at least two months (range of use = 69 - 1073 days). Results: Log data from users’ Fitbit devices revealed two stages in their activity tracker use: the novelty period and the long-term use period. The novelty period for Fitbit users in this study was approximately three months, during which they might have discontinued using their devices. Discussion: The qualitative interview data identified various factors that motivate users to continuously use Fitbit devices in different stages. The discussion of these results provides design implications to guide future development of activity tracking technology. Conclusion: This study reveals important dynamics emerging over long-term activity tracker use, contributes new knowledge to consumer health informatics and human-computer interaction, and offers design implications to guide future development of similar health-monitoring technologies that better account for long-term use in support of patient care and health self-management

    Motivations and barriers to pursue cancer genomic testing: A systematic review

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    Objectives: Single-gene testing is associated with psycho-social challenges for cancer patients. Genomic testing may amplify these. The aim of this study was to understand patients’ motivations and barriers to pursue cancer genomic testing, to enable healthcare providers to support their patients throughout the testing process and interpretation of test results. Methods: Five databases were searched for original peer reviewed research articles published between January 2001 and September 2018 addressing motivation for genomic cancer testing. QualSyst was used to assess quality. Results: 182 studies were identified and 17 were included for review. Studies were heterogenous. Both somatic and germline testing were included, and 14 studies used hypothetical scenarios. 3249 participants were analyzed, aged 18 to 94. Most were female and white. The most common diagnoses were breast, ovarian, lung and colorectal cancer. Interest in testing was high. Motivations included ability to predict cancer risk, inform disease management, benefit families, and understand cancer. Barriers included concerns about cost, privacy/confidentiality, clinical utility, and psychological harm. Conclusions: Despite concerns, consumers are interested in cancer genomic testing if it can provide actionable results for themselves and their families. Practice Implications: Providers must manage understanding and expectations of testing and translate genetic information into health-promoting behaviours. © 2021 Elsevier B.V. All rights reserve

    Two Groups’ Device Usage Patterns Over Time

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    Two Groups’ Device Usage Patterns Over Time (High-usage group vs Low-usage group

    Do handwriting difficulties correlate with core symptomology, motor proficiency and attentional behaviours?

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    Handwriting is commonly identified as an area of weakness in children with autism spectrum disorder (ASD), but precise deficits have not been fully characterised. Boys with ASD (n&thinsp;=&thinsp;23) and matched controls (n&thinsp;=&thinsp;20) aged 8-12 years completed a simple, digitised task to objectively assess handwriting performance using advanced descriptive measures. Moderate to large associations were identified between handwriting performance and attention, ASD symptoms and motor proficiency. The ASD group demonstrated significantly less smooth movements and significantly greater sizing variability and peak velocity relative to controls. These findings provide a clearer indication of the specific nature of handwriting impairments in children with ASD, and suggest a relationship with core clinical symptom severity, attention and motor behaviours
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