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Myeloma bone disease (MBD) affects ~90% of multiple myeloma patients, but current treatment options are suboptimal. Therefore, to successfully develop new therapies or optimize current ones, we must improve our fundamental knowledge of how myeloma affects bone microstructure and function. Here, we have investigated the osteocyte lacuno-canalicular network (LCN) in MBD, as bone porosity affects bone quality and resilience. We used the syngeneic 5TGM1-C57BL-Kalwrij and the xenograft U266-NSG models at end stage and compared them to healthy controls (naïve). Micro-computed tomography (µCT) and histomorphometry indicated the 5TGM1 and U266 models developed mild and extensive MBD, respectively, with the U266 model producing large osteolytic lesions. High-resolution synchrotron micro-CT (SR-µCT) revealed significant osteocyte lacunae changes in U266 bones but not 5TGM1, with a reduction in lacunae number and sphericity, and an increase in lacunae volume compared with naïve. Canalicular length, visualized using histological Ploton silver staining, appeared significantly shorter in 5TGM1 and U266 bones compared with naïve. Canalicular area as a proportion of the bone was also decreased by 24.2% in the U266 model. We observed significant upregulation of genes implicated in peri-lacunar remodeling (PLR), but immunohistochemistry confirmed that the osteocyte-specific protein sclerostin, a known driver of PLR, was unchanged between MBD and naïve bones. In summary, we have demonstrated evidence of PLR and altered organization of the osteocyte LCN in MBD mouse models. The next step would be to further understand the drivers and implications of PLR in MBD, and whether treatments to manipulate PLR and the LCN may improve patient outcomes.
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Talking about dying when faced with end-of-life may be important for achieving optimal outcomes for young people and their families. Given the lack of research on young people's communication around end-of-life and death, this analogue study examined the role of attachment theory in conversations about dying. Experiment 1 assessed attachment security of 80 healthy young adults and randomised them to receive either an induction that raised awareness of one's attachment figures or a neutral induction, and then primed them with an imagined scenario where they were diagnosed with an incurable illness. Participants then completed a self-report measure of their willingness to discuss end-of-life topics with family, friends, or a psychologist. The experimental attachment induction did not increase willingness to talk about end-of-life concepts. Experiment 2 extended this design and asked participants to describe these conversations and assessed the content of their imagined end-of-life conversations. Experiment 2 replicated the finding that enhancing individuals' awareness of key attachment figures did not increase participants' willingness to engage in end-of-life conversations. However, heightened attachment awareness led participants to talk more about their relationship with the person they were hypothetically talking with. Across both experiments, avoidant attachment tendencies reduced the likelihood that participants receiving the attachment prime would want to engage in end-of-life conversation. Overall, it seems there are important differences between individuals on willingness to talk about death, and this may be influenced by one's attachment style. These results raise implications for the importance of attachment in the therapeutic relationship for healthcare professionals working with young people with life-limiting illnesses, such as cancer. Further research may shed light on how an individually tailored approach, taking into account attachment security, achieves the best outcomes for individuals who require end-of-life conversations.
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Comunicação , Apego ao Objeto , Assistência Terminal , Humanos , Masculino , Feminino , Adulto Jovem , Assistência Terminal/psicologia , Adulto , Adolescente , Atitude Frente a MorteRESUMO
OBJECTIVES: Hard-to-treat childhood cancers are those where standard treatment options do not exist and the prognosis is poor. Healthcare professionals (HCPs) are responsible for communicating with families about prognosis and complex experimental treatments. We aimed to identify HCPs' key challenges and skills required when communicating with families about hard-to-treat cancers and their perceptions of communication-related training. METHODS: We interviewed Australian HCPs who had direct responsibilities in managing children/adolescents with hard-to-treat cancer within the past 24 months. Interviews were analyzed using qualitative content analysis. RESULTS: We interviewed 10 oncologists, 7 nurses, and 3 social workers. HCPs identified several challenges for communication with families including: balancing information provision while maintaining realistic hope; managing their own uncertainty; and nurses and social workers being underutilized during conversations with families, despite widespread preferences for multidisciplinary teamwork. HCPs perceived that making themselves available to families, empowering them to ask questions, and repeating information helped to establish and maintain trusting relationships with families. Half the HCPs reported receiving no formal training for communicating prognosis and treatment options with families of children with hard-to-treat cancers. Nurses, social workers, and less experienced oncologists supported the development of communication training resources, more so than more experienced oncologists. SIGNIFICANCE OF RESULTS: Resources are needed which support HCPs to communicate with families of children with hard-to-treat cancers. Such resources may be particularly beneficial for junior oncologists and other HCPs during their training, and they should aim to prepare them for common challenges and foster greater multidisciplinary collaboration.
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Comunicação , Pessoal de Saúde , Neoplasias , Pesquisa Qualitativa , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Pessoal de Saúde/psicologia , Pessoal de Saúde/estatística & dados numéricos , Feminino , Masculino , Adulto , Austrália , Relações Profissional-Família , Pessoa de Meia-Idade , Adolescente , CriançaRESUMO
Pachyonychia Congenita Project (PC Project) is an international patient advocacy organization dedicated to patients who suffer from pachyonychia congenita (PC). This condition is a painful and debilitating skin disorder caused by a mutation in one of five keratin genes: KRT6A, KRT6B, KRT6C, KRT16,or KRT17. Through two primary programs, namely the International Pachyonychia Congenita Consortium (IPCC) and the International Pachyonychia Congenita Research Registry (IPCRR), PC Project provides comprehensive patient support and diagnostics while uniting patients, researchers, physicians, and industry partners on a global level to advance research and drug development for meaningful treatments and, ultimately, a cure for PC.
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Advance care planning (ACP) is crucial in supporting optimal, patient-centered care for adolescents and young adults (AYAs) with life-limiting illnesses and can reduce unwanted outcomes at end-of-life. While several ACP tools and interventions have been designed for AYAs, most of these were developed in the United States of America (USA). This paper describes a study designed to adapt the AYA ACP tool, Voicing My CHOiCES (VMC), for the Australian population. A 2-stage mixed methods approach was used. Stage 1 involved a multiperspective interview to determine changes for the new Australian VMC. Participants were AYAs between the ages of 15 to 25, healthcare professionals, and parents. For each section, participants responded to questions targeting the helpfulness and usefulness of the items as well as open-ended questions about any suggested content or formatting changes. Stage 2 used think-aloud interviews asking AYA cancer patients and survivors aged between 15 and 39 years to respond to proposed changes for the Australian VMC. Stage 1 participants suggested changes to all pages of VMC, with proposed changes being based around language, content, and format. Stage 2 participants qualitatively confirmed the acceptability of these changes. Our data suggests that even between similar Western cultures, significant adaptations can be made to make ACP tools more culturally appropriate. More research is needed to further adapt ACP tools like VMC for culturally and linguistically diverse groups and to ensure these tools can be accessed by all AYAs with life-limiting illness.
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Planejamento Antecipado de Cuidados , Neoplasias , Humanos , Adolescente , Adulto Jovem , Estados Unidos , Adulto , Comparação Transcultural , Austrália , Neoplasias/terapiaRESUMO
Background Plantar keratoderma is a common finding in pachyonychia congenita, significantly impairing ambulation and quality of life. Due to the variation of pain reporting in pachyonychia congenita clinical studies, it is difficult to evaluate the efficacy of treatment outcomes for painful plantar keratodermas. Objectives To objectively analyse associations between plantar pain and activity levels in pachyonychia congenita patients using a wristband tracker. Methods Pachyonychia congenita patients and matched normal controls wore wristband activity trackers and completed a daily digital survey to record their highest and total pain scores (0-10 scale) each day for 28 consecutive days during four different seasons. Results Twenty four participants (12 pachyonychia congenita patients and 12 matched normal controls) completed the study. Pachyonychia congenita patients walked 1801.30 fewer steps/day (95% CI, -3666.4, 64.1) than normal controls (P = 0.072) and had greater average total [5.26; SD, 2.10] and highest (6.92; SD, 2.35) daily pain than normal controls [0.11 (SD, 0.47), 0.30 (SD, 0.22), respectively] (P < 0.001, both). On average, for each one unit increase in daily highest pain level, pachyonychia congenita activity decreased 71.54 steps/day (SE, 38.90, P = 0.066). Limitation The study had a small number of participants, limiting statistical power. Only pachyonychia congenita patients, ages 18 years or older, with keratin 6a, keratin 16, and keratin 17 mutations were included, limiting generalizability. Conclusion Pachyonychia congenita patients were less active with significantly higher pain than normal controls. There was an inverse correlation between pain and activity. Our findings suggest that wristband tracker technology may be used to evaluate treatment efficacy in future trials on severe plantar pain; therapeutic interventions that decrease plantar pain should correlate with significant increases in activity using wristband trackers.
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Paquioníquia Congênita , Humanos , Paquioníquia Congênita/tratamento farmacológico , Paquioníquia Congênita/genética , Qualidade de Vida , Monitores de Aptidão Física , Sapatos , Queratina-6/genética , Dor , Mutação , CaminhadaRESUMO
Multiple myeloma (MM) is a neoplasia of B plasma cells that often induces bone pain. However, the mechanisms underlying myeloma-induced bone pain (MIBP) are mostly unknown. Using a syngeneic MM mouse model, we show that periosteal nerve sprouting of calcitonin gene-related peptide (CGRP+) and growth associated protein 43 (GAP43+) fibers occurs concurrent to the onset of nociception and its blockade provides transient pain relief. MM patient samples also showed increased periosteal innervation. Mechanistically, we investigated MM induced gene expression changes in the dorsal root ganglia (DRG) innervating the MM-bearing bone of male mice and found alterations in pathways associated with cell cycle, immune response and neuronal signaling. The MM transcriptional signature was consistent with metastatic MM infiltration to the DRG, a never-before described feature of the disease that we further demonstrated histologically. In the DRG, MM cells caused loss of vascularization and neuronal injury, which may contribute to late-stage MIBP. Interestingly, the transcriptional signature of a MM patient was consistent with MM cell infiltration to the DRG. Overall, our results suggest that MM induces a plethora of peripheral nervous system alterations that may contribute to the failure of current analgesics and suggest neuroprotective drugs as appropriate strategies to treat early onset MIBP.SIGNIFICANCE STATEMENT Multiple myeloma (MM) is a painful bone marrow cancer that significantly impairs the quality of life of the patients. Analgesic therapies for myeloma-induced bone pain (MIBP) are limited and often ineffective, and the mechanisms of MIBP remain unknown. In this manuscript, we describe cancer-induced periosteal nerve sprouting in a mouse model of MIBP, where we also encounter metastasis to the dorsal root ganglia (DRG), a never-before described feature of the disease. Concomitant to myeloma infiltration, the lumbar DRGs presented blood vessel damage and transcriptional alterations, which may mediate MIBP. Explorative studies on human tissue support our preclinical findings. Understanding the mechanisms of MIBP is crucial to develop targeted analgesic with better efficacy and fewer side effects for this patient population.
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Doenças Ósseas , Mieloma Múltiplo , Tecido Nervoso , Humanos , Camundongos , Masculino , Animais , Mieloma Múltiplo/complicações , Mieloma Múltiplo/metabolismo , Mieloma Múltiplo/patologia , Qualidade de Vida , Dor/metabolismo , Tecido Nervoso/metabolismo , Tecido Nervoso/patologia , Gânglios Espinais/metabolismoRESUMO
Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to help facilitate these difficult discussions. This multi-perspective study aimed to evaluate its appropriateness, acceptability, and clinical considerations for Australian AYAs with cancer. Procedure: Forty-three participants including AYAs who were either undergoing or recently completed cancer treatment, their parents, and multidisciplinary health professionals assessed the acceptability of each VMC section quantitatively (appropriateness-yes/no, helpfulness and whether content caused stress-1 = not at all, to 5 = very) and qualitatively (sources of stress). AYAs also assessed the benefit and burden of completing several sections of the document, to inform clinical considerations. We conducted a mixed-methods analysis to obtain descriptive statistics and to identify prominent themes. Results: In terms of acceptability, almost all participants (96%) rated VMC as appropriate overall. Perceived helpfulness to their situation (to themselves/their child/their patients), to others, and stressfulness were rated, on average, as 4.1, 4.0, and 2.7/5, respectively. Stress was attributed to individual and personal factors, as well as interpersonal worries. All sections were considered more beneficial than burdensome, except for the Spiritual Thoughts section (Section 6). Conclusions: While VMC is an acceptable advance care planning guide for AYAs with cancer, changes to the guide were suggested for the Australian context. Health professionals implementing VMC will need to address and mitigate anticipated sources of stress identified here. Future research evaluating the impact of a new culturally adapted Australian VMC guide is an important next step. Finally, the clinical implications of the present study are suggested.
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BACKGROUND: Immunotherapy emerged as a promising treatment option for multiple myeloma (MM) patients. However, therapeutic efficacy can be hampered by the presence of an immunosuppressive bone marrow microenvironment including myeloid cells. S100A9 was previously identified as a key regulator of myeloid cell accumulation and suppressive activity. Tasquinimod, a small molecule inhibitor of S100A9, is currently in a phase Ib/IIa clinical trial in MM patients (NCT04405167). We aimed to gain more insights into its mechanisms of action both on the myeloma cells and the immune microenvironment. METHODS: We analyzed the effects of tasquinimod on MM cell viability, cell proliferation and downstream signaling pathways in vitro using RNA sequencing, real-time PCR, western blot analysis and multiparameter flow cytometry. Myeloid cells and T cells were cocultured at different ratios to assess tasquinimod-mediated immunomodulatory effects. The in vivo impact on immune cells (myeloid cell subsets, macrophages, dendritic cells), tumor load, survival and bone disease were elucidated using immunocompetent 5TMM models. RESULTS: Tasquinimod treatment significantly decreased myeloma cell proliferation and colony formation in vitro, associated with an inhibition of c-MYC and increased p27 expression. Tasquinimod-mediated targeting of the myeloid cell population resulted in increased T cell proliferation and functionality in vitro. Notably, short-term tasquinimod therapy of 5TMM mice significantly increased the total CD11b+ cells and shifted this population toward a more immunostimulatory state, which resulted in less myeloid-mediated immunosuppression and increased T cell activation ex vivo. Tasquinimod significantly reduced the tumor load and increased the trabecular bone volume, which resulted in prolonged overall survival of MM-bearing mice in vivo. CONCLUSION: Our study provides novel insights in the dual therapeutic effects of the immunomodulator tasquinimod and fosters its evaluation in combination therapy trials for MM patients.
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Reabsorção Óssea , Mieloma Múltiplo , Quinolonas , Animais , Camundongos , Reabsorção Óssea/metabolismo , Reabsorção Óssea/patologia , Proliferação de Células , Imunossupressores/farmacologia , Mieloma Múltiplo/patologia , Células Mieloides/metabolismo , Quinolonas/farmacologia , Quinolonas/uso terapêutico , Quinolonas/metabolismo , Microambiente Tumoral , HumanosRESUMO
BACKGROUND: Lung cancer is the leading cause of cancer-related death globally. Physical activity and exercise provide unequivocal benefits to those living with and beyond lung cancer. However, few of those living with and beyond cancer meet the national physical activity guidelines. Various barriers exist for this population's engagement in physical activity and exercise, such as the lack of knowledge and lack of tailored information, little access to exercise specialists, fatigue, and mobility challenges. Digitally delivered programmes have the potential to address several of these barriers, with techniques like "computer-tailoring" available to enable the delivery of tailored content at a time and place that is convenient. However, evaluation of such programmes is needed prior to implementation. This protocol describes a single group study that will examine the feasibility and acceptability of an online tool (ExerciseGuide UK) that provides those living with and beyond lung cancer web-based computer-tailored physical activity prescription and modules underpinned by behaviour change theories. METHODS: Thirty-five individuals diagnosed with lung cancer, or cancer affecting the lung (e.g. pleural mesothelioma), will be recruited into a single-intervention arm. The platform will provide tailored resources and a personalised physical activity programme using IF-THEN algorithms. Exercise prescription will be tailored on factors such as self-reported specific pain location, exercise history, and current physical fitness. In addition, modules grounded in behaviour change will supplement the physical activity programme and will focus on topics such as exercise benefits, safety, goal setting, and tracking. The primary outcome will be assessed using pre-established criteria on feasibility and mixed-methods approach for acceptability. Secondary outcomes will explore changes in the physical activity, quality of life, anxiety, and depression. DISCUSSION: This manuscript describes the protocol for a study examining the feasibility and acceptability of a web-based computer-tailored physical activity intervention for those living with and beyond lung cancer. The publication of this protocol aims to increase the transparency of the methods, report pre-determined criteria, and aid replication of the study and associated materials. If feasible and acceptable, this intervention will inform future studies of digital-based interventions. TRAIL REGISTRATION: ClinicalTrails.gov , NCT05121259. Registered on November 16, 2021.
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The phenotypic spectrum of genodermatoses is continuously expanding. Three siblings were referred because of a highly unusual phenotype comprising alopecia, dystrophic nails, palmoplantar keratoderma and trauma-induced skin blistering. Whole-exome sequencing analysis identified a heterozygous large genomic alteration of around 116 0000 bp resulting in the deletion of the KRT9, KRT14, KRT15, KRT16 and KRT19 genes, as well as part of KRT17. This genomic change leads to the generation of a truncated keratin 17 (KRT17) protein encoded by the first three exons of the gene and part of intron 3. The three patients were found to carry the heterozygous genomic deletion while their healthy parents did not, indicative of germline mosaicism. The genomic alteration was found to result in reduced KRT17 expression in patient skin. More importantly, the abnormal truncated KRT17 was found to exert a deleterious effect on keratinocyte cytoskeleton formation, leading to keratin aggregation. Coexpression of wildtype and truncated KRT17 proteins also caused keratin aggregation, demonstrating that the deletion exerts a dominant negative effect. In conclusion, we are reporting on a novel clinical phenotype that was found to result from germline mosaicism for a large genomic deletion spanning six keratin genes, thus expanding the spectrum of clinical manifestations associated with keratin disorders. What is already known about this topic? Various conditions known as keratinopathies have been shown over recent years to be associated with dominant or recessive variants in several individual keratin genes. What does this study add? We report three patients presenting with a unique clinical phenotype that was found to result from germline mosaicism for a large genomic deletion spanning six keratin genes. The genomic variant is predicted to result in a truncated form of keratin 17, which was found in an in vitro assay to disrupt keratinocyte cell cytoskeleton formation.
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Queratina-17 , Queratinas , Queratina-17/genética , Heterozigoto , Fenótipo , Citoesqueleto , Mutação , Queratina-6/genética , Queratina-14/genética , Queratina-16RESUMO
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.
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Comunicação , Neoplasias , Adolescente , Consenso , Morte , Técnica Delphi , Humanos , Neoplasias/terapia , Adulto JovemRESUMO
The human population is ever increasing while the quality and quantity of natural resources used for livestock production decline. This calls for improved product efficiency and the development of improved and sustainable cattle production methods to produce higher quality products to satisfy the demands of both the modern and transient world. The goal of this review was to summarize the interactions, challenges, and opportunities in cattle production relating to their endocrine system, and how reproductive hormones and others impact economically important traits, animal welfare, and human health. A comprehensive literature search was conducted with a focus on analysis of natural hormones and the use of exogenous hormone administration for reproduction, growth, and development of beef and dairy cattle. Hormones regulate homeostasis and enhance important traits in cattle, including fertility, growth and development, health, and the production of both meat and milk products. Reproductive hormones such as testosterone, estradiol, progesterone, and related synthetics like trenbolone acetate and zeranol can be strategically utilized in both beef and dairy cattle production systems to enhance their most valuable traits, but the impact of these substances must account for the welfare of the animal as well as the health of the consumer. This scientific review provides a comprehensive analysis of the bovine endocrine system's impact on food animals and product quality which is vital for students, researchers, livestock producers, and consumers. Although important advances have been made in animal science and related technological fields, major gaps still exist in the knowledge base regarding the influence of hormones on the production and welfare of food animals as well as in the public perception of hormone use in food-producing animals. Filling these gaps through transformative and translational research will enhance both fundamental and applied animal science to feed a growing population.
The animal production industry is responsible for providing products like meat, dairy, and egg products to the growing human population of the world. Within each sector, there are production practices that can improve the overall productivity of the animals and contribute to their welfare. One such avenue for enhanced production is the inclusion of hormones. Hormones are naturally produced within the body by the endocrine system which helps initiate many life processes and transition the body to different stages of production. Hormones influence many important traits such as growth and development, milk production, fertility, and health within the cattle industry. Exogenous hormone use in animals has proven to improve a number of traits and qualities of animal products, but it has also struck up controversy. There are wide deficiencies in the full understanding of roles, applications, and implications of hormones in livestock, making it of high importance for further exploration. In this review, the mechanisms of hormones and their broad uses are explored to provide more context to the conversation of hormone use in animals. Knowledge of endocrinology is powerful and can aid in the advancement of fundamental science and animal development and production.
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Bem-Estar do Animal , Leite , Animais , Bovinos , Hormônios , Humanos , Gado , Carne/análise , Leite/químicaAssuntos
Planejamento Antecipado de Cuidados , Criança , Humanos , Adulto Jovem , Estudos Transversais , Nível de SaúdeRESUMO
Preliminary research has shown the effectiveness of supervised exercise-based interventions in alleviating sequela resulting from metastatic prostate cancer. However, many individuals encounter barriers that limit the uptake of face-to-face exercise. Technology-enabled interventions offer a distance-based alternative. This pilot study aimed to explore the acceptability, safety and preliminary efficacy of a web-based exercise intervention (ExerciseGuide) in individuals with metastatic prostate cancer. Forty participants (70.2 ± 8.5 years) with metastatic prostate cancer were randomised into the 8-week intervention (N = 20) or a wait-list control (N = 20). The intervention arm had access to a computer-tailored website, personalised exercise prescription and remote supervision. ExerciseGuide was deemed acceptable with a score ≥20 on the client satisfaction questionnaire; however, the usability score was just below the pre-specified score of ≥68 on the software usability scale. There were no serious adverse events reported. Moderate-to-vigorous physical activity levels between baseline and follow-ups were significantly higher (10.0 min per day; 95% CI = (1.3-18.6); p = 0.01) in the intervention group compared to wait-list control. There were also greater improvements in step count (1332; 95% CI = (159-2505); p = 0.02) and identified motivation (0.4, 95% CI = (0.0, 0.7); p = 0.04). Our findings provide preliminary evidence that ExerciseGuide is acceptable, safe and efficacious among individuals with metastatic prostate cancer.
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BACKGROUND: Digital health interventions such as tailored websites are emerging as valuable tools to provide individualized exercise and behavioral change information for individuals diagnosed with cancer. OBJECTIVE: The aim of this study is to investigate and iteratively refine the acceptability and usability of a web-based exercise intervention (ExerciseGuide) for men with metastatic prostate cancer and determine how well individuals can replicate the video-based exercise prescription. METHODS: A laboratory-based multi-methods design was used, incorporating questionnaires, think-aloud tests, interviews, and movement screening among 11 men aged 63 to 82 years with metastatic prostate cancer. Overall, 9 participants were undergoing androgen deprivation therapy, and 2 were completing chemotherapy. Data were collected in two waves, with changes made for quality improvement after participant 5. RESULTS: The intervention's usability score was deemed moderate overall but improved after modifications (from 60, SD 2.9 to 69.6, SD 2.2 out of 100). Overall, the participants found the intervention acceptable, with scores improving from wave 1 (24.2, SD 1.1 out of 30) to wave 2 (26.3, SD 2.1 out of 30). The personalized multimodal exercise prescription and computer-tailored education were seen as valuable. After wave 1, website navigation videos were added, medical terminology was simplified, and a telehealth component was included after expert real-time telehealth support was requested. Wave 2 changes included the added variety for aerobic exercise modes, reduced computer-tailoring question loads, and improved consistency of style and grammar. Finally, the participants could replicate the resistance exercise videos to a satisfactory level as judged by the movement screen; however, additional technique cueing within the videos is recommended to address safety concerns. CONCLUSIONS: The acceptability and usability of ExerciseGuide were deemed satisfactory. Various problems were identified and resolved. Notably, the participants requested the inclusion of personalized expert support through telehealth. The resistance training algorithms were shown to provide appropriate content safely, and the users could replicate the exercise technique unaided to a satisfactory level. This study has optimized the ExerciseGuide intervention for further investigation in this population. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12618001978257; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12618001978257.
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Purpose: Adolescent and young adult (AYA) cancer survivors' families can face ongoing challenges into survivorship. Families' adjustment and functioning as a unit can subsequently impact AYAs' mental health and quality of life. This study examined AYA cancer survivors' perceived family functioning, compared with their peers, and investigated factors associated with family functioning. Methods: Eligible participants were aged between 15 and 40 years, fluent in English, and cancer survivors who had completed treatment. AYA cancer survivors were recruited from hospital clinics, and the comparison group from an affiliated university campus. Participants completed the McMaster Family Assessment Device, Kidcope, and the Depression, Anxiety and Stress Scale-Short Form. We analyzed between-group differences in family functioning using multivariate analysis of covariance and used partial correlations to investigate associations between demographic cancer-related psychological coping variables and family functioning. Results: Ninety-three AYA cancer survivors and 141 comparison peers participated (ages: 15-32 years). AYA cancer survivors reported significantly better family functioning (p = 0.029), lower depression (p = 0.016), and anxiety symptoms (p = 0.008) compared with the comparison group. Approximately one-third of AYA survivors (34.4%) reported clinically significant maladaptive family functioning; however, this was more prevalent in the comparison group (50.4%). After adjusting for covariates, poorer family functioning was associated with AYA survivors using more avoidant escape-oriented coping strategies (p = 0.010). Conclusions: Our cancer survivor cohort reported better family functioning and psychological outcomes compared with their peers. Interventions targeting avoidant coping behaviors may support improved family functioning in some survivors. Further research disentangling the relationship between coping mechanisms and family functioning among AYA cancer survivors is needed.