ORCID Profile
0000-0001-9395-7896
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Publisher: Springer Science and Business Media LLC
Date: 30-05-2018
DOI: 10.1007/S00421-018-3900-5
Abstract: Increased arterial stiffness is observed with ageing and in in iduals with low cardiorespiratory fitness ([Formula: see text]O Fifty-one older adults (72 ± 5 years) were stratified into fitness tertiles ([Formula: see text]O After control, delta PWV increased over time (P < 0.001) and delta RM was unchanged. After higher-intensity interval exercise, delta PWV (P < 0.001) and delta RM (P < 0.001) were lower to control in all fitness groups. After moderate-intensity continuous exercise, delta PWV was not different from control in low-fit adults (P = 0.057), but was lower in the mid- and higher-fit older adults. Post-exercise AIx75 was higher to control in all fitness groups (P = 0.001). In older adults, PWV increases during seated rest and this response is attenuated after higher-intensity interval exercise, regardless of fitness level. This attenuation was also observed after moderate-intensity continuous exercise in adults with higher, but not lower fitness levels. Submaximal exercise reveals differences in the arterial stiffness responses between older adults with higher and lower cardiorespiratory fitness.
Publisher: Mary Ann Liebert Inc
Date: 12-2017
Abstract: Psychological support services for adolescent and young adults (AYAs) with cancer are moving online and are increasingly peer based. It is unclear whether online service delivery impacts critical therapeutic elements such as collaborative patient-therapist rapport and group cohesion. AYA cancer survivors (N = 39) participating in a six-week online cognitive-behavioral therapy group program-"Recapture Life"-rated their perception of therapeutic alliance and group cohesion. Participant-rated alliance and group cohesion were high throughout the program, and therapist-rated participant openness, trust, and motivation strengthened over time. The findings provide further support for the expansion of AYA cancer support services to the online domain.
Publisher: Elsevier BV
Date: 06-2017
DOI: 10.1016/J.CRITREVONC.2017.04.007
Abstract: Childhood cancer survivors are at risk of developing late treatment-related complications. In response, many hospitals worldwide have established follow-up clinics to monitor survivors as they age. However, there is limited evidence of the efficacy of these clinics in meeting the lifelong healthcare needs of survivors. In this review we collated evidence of the measurable impact of engagement in specialized survivorship care, on survivors' medical and psychosocial outcomes. We conducted a systematic review according to PRISMA guidelines, and assessed the quality of included studies using 'QualSyst'. We screened 641 abstracts in Medline, Embase and CINAHL, yielding 9 eligible articles (N=5135 survivors). Articles were eligible if: participants were diagnosed with cancer prior to the age of 21 participants were classified as 'survivors' of childhood or adolescent cancer, usually defined as 5 years from diagnosis or 2 years from the end of treatment studies evaluated the impact of engagement in long term follow-up (LTFU) care on medical, psychosocial or other outcomes in pediatric cancer survivors. One article evaluated primary care physician-led follow-up and the remainder evaluated specialized survivorship clinics. Survivors attending follow-up care tended to demonstrate higher knowledge about their treatment and diagnosis (n=2), and had more accurate late effects risk perception (n=3). Attendees also engaged in increased more regular surveillance, had fewer emergency department visits/hospitalizations (n=1), and more late effects detected (n=3), than non-attendees. There is a dearth of literature systematically evaluating the medical and psychosocial impact of follow-up care. Research suggests however, survivors engaged in follow-up care have better health and educational outcomes, highlighting the need for lifelong survivorship care and ongoing late effects education for survivors. Recalling survivors who become disengaged with follow-up care is also valuable, as their risk of treatment-related complications rises with age. Further systematic evaluation is urgently needed.
Publisher: Wiley
Date: 27-06-2023
DOI: 10.1002/CNCR.34914
Abstract: Precision medicine is projected to become integral to childhood cancer care. As such, it is essential to support families to understand what precision medicine entails. A total of 182 parents and 23 adolescent patients participating in Precision Medicine for Children with Cancer (PRISM), an Australian precision medicine clinical trial for high‐risk childhood cancer, completed questionnaires after study enrollment (time 0 [T0]). Of the parents, 108 completed a questionnaire and 45 completed an interview following return of precision medicine results (time 1 [T1]). We analyzed the mixed‐methods data comprising measures exploring families’ perceptions and understanding of PRISM’s participant information sheet and consent form (PISCF), and factors associated with understanding. Most parents were satisfied with the PISCF, rating it as at least “somewhat” clearly presented ( n = 160/175 91%) and informative ( n = 158/175 90%). Many suggested improvements including the use of clearer language and a more visually engaging format. Parents’ actual understanding of precision medicine was low on average, but scores improved between T0 and T1 (55.8/100‐60.0/100 p = .012). Parents from culturally and/or linguistically erse backgrounds ( n = 42/177 25%) had lower actual understanding scores than those from a Western/European background whose first language was English ( p = .010). There was little correlation between parents’ perceived and actual understanding scores ( p = .794 Pearson correlation –0.020 95% CI, –0.169 to 0.116). Most adolescent patients read the PISCF either “briefly” or “not at all” (70%) and had a perceived understanding score of 63.6/100 on average. Our study revealed gaps in families’ understanding of childhood cancer precision medicine. We highlighted areas for potential intervention such as through targeted information resources. Precision medicine is projected to become part of the standard of care for children with cancer. Precision medicine aims to give the right treatment to the right patient and involves several complex techniques, many of which may be challenging to understand. Our study analyzed questionnaire and interview data from parents and adolescent patients enrolled in an Australian precision medicine trial. Findings revealed gaps in families’ understanding of childhood cancer precision medicine. Drawing on parents’ suggestions and the literature, we make brief recommendations about improving information provision to families, such as through targeted information resources.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 2023
DOI: 10.1200/GO.22.00281
Publisher: Springer Science and Business Media LLC
Date: 25-01-2018
DOI: 10.1007/S11136-018-1788-5
Abstract: Acute lymphoblastic leukemia (ALL) survivors are the largest group of childhood cancer survivors however, their risk for late effects is high. Cancer-related late effects have the potential to compromise health-related quality of life (HRQL) long into survivorship. None of the reviews so far have focused on ALL solely, but described HRQL for all childhood cancers. We aimed to identify ALL survivors at risk for poor HRQL and identify possible risk factors. Following PRISMA guidelines, we performed a systematic review, searching published literature in Pubmed, PsycInfo, Embase, and the Cochrane database including all publications up to December 16, 2016. Two independent reviewers (JV and ER) screened eligible articles and assessed article quality. We found 31 studies representing 4356 survivors and 901 proxies. Thirteen studies found worse, eight found no difference, and three better, overall HRQL scores compared with healthy controls or norms. ALL survivors typically had better overall HRQL scores than survivors of other childhood cancers. Clinical variables (e.g., treatment received) were not consistently associated with HRQL however, experiencing worse late effects was associated with lower HRQL. Survivor and parent socio-demographic factors and psychological factors such as resilience and depression were also associated with HRQL. ALL survivors appeared to have worse or equivalent HRQL compared with controls, but better HRQL than survivors of other cancer types. However, studies reported a wide variability in HRQL and potential risk factors for poor HRQL. Measuring ALL survivors' HRQL longitudinally and comprehensively assessing potential risk factors might identify future avenues to intervene early.
Publisher: Wiley
Date: 28-11-2018
DOI: 10.1002/PON.4938
Abstract: Online psychological therapies provide a way to connect adolescent and young adult (AYA) cancer survivors to evidence-based support. We aimed to establish the feasibility, acceptability, and safety of Recapture life, a six-session group-based online cognitive-behavioural intervention, led by a facilitator, for AYAs in the early post-treatment period. A randomised-controlled trial compared Recapture Life to an online peer-support group control and a waitlist control. Participants could nominate a support person. Acceptability was assessed using study opt-in and retention rates, participant-reported benefits/burdens of participation, and group facilitator burden. We also assessed the feasibility (eg, frequency/impact of technological difficulties) and psychological safety (ie, occurrence of clinically concerning distress) of the program. Sixty-one participants took part (45 AYAs, 51.1% female 19 support people). The opt-in rate was 30%, the enrolment rate was 87%, and 75% of participants took part in ≥5/6 sessions. AYAs reported high benefit and low burden of participation. Overall, 95 online group sessions were conducted few required rescheduling by group facilitators (3%), but many took place outside of office hours (~90 hours). It took 40 days on average to create online groups, but established weekly sessions commenced quickly (M = 4.0 minutes). Technological difficulties were common but had a low impact on intervention delivery. Although 54% of AYAs returned a clinically concerning distress screen at some point, none reflected acute mental health risks. The data largely indicate that Recapture Life is an acceptable, feasible, and safe model of evidence-based psychological support for AYAs during early survivorship, which nevertheless experienced common challenges in online/AYA intervention delivery.
Publisher: Mary Ann Liebert Inc
Date: 09-2016
Abstract: This study examined the quality and satisfaction of sexual/romantic relationships of adolescents/young adults (AYAs) who recently completed cancer treatment. AYAs between 16 and 26 years old (62.5% female) and less than 24 months post-treatment were interviewed using the Psychosocial Adjustment to Illness Scale (PAIS) interview. Of 43 participants, 16 (37.2%) were in a relationship at time of the interview eight (50%) reported minor relationship/sexual difficulties. AYAs identified emotional support with their partner as positive aspects of their relationships, and described relational conflict associated with communication difficulties and loss of sexual interest. Better understanding the factors that enable healthy relationships warrants further exploration.
Publisher: Wiley
Date: 30-09-2018
DOI: 10.1002/PON.4856
Abstract: Identity formation is a key developmental milestone for adolescents and young adults (AYAs). Autobiographical memory and future-thinking are crucial cognitive processes underpinning this, which may be impacted by cancer experiences. We know little about how these processes might be related to AYAs' adjustment to cancer, quality of life (QoL), and mental health outcomes. We examined autobiographical memory and future-thinking processes, and their relationship with mental health outcomes, among 77 AYA cancer survivors (M Relative to controls, survivors recounted more negative life narratives (P = .000). Survivors' memories and future lives were more health/illness-focused (P = .000) and they remembered past events with greater specificity (P = .007) than controls. In contrast, survivors imagined their future lives with less specificity than controls (P = .000). Regression analyses highlighted that being female, greater identification as a "cancer survivor," worse depression, and recent cancer treatment-completion significantly predicted maladaptive autobiographical thinking processes. These findings point to key modifiable cognitive processes relevant to AYAs' cancer-related adjustment and future mental health. To bolster resilience into longer-term survivorship, clinicians could adapt existing evidence-based, cognitive-behavioural interventions to assist AYAs to imagine future events in greater detail.
Publisher: Springer Science and Business Media LLC
Date: 21-07-2016
DOI: 10.1007/S11886-016-0759-0
Abstract: Type 2 diabetes mellitus (T2DM) is a well-recognized risk factor for cardiovascular diseases and cardiac death. While the increased mortality of patients with DM has traditionally been attributed to coronary artery disease, approximately half of the mortality has other causes, including non-ischemic heart failure (HF). In this context, effective screening and diagnosis of cardiac structural and functional abnormalities are crucial for preventive strategies and for predicting prognosis. This review discusses various echocardiographic diagnostic modalities, including tissue Doppler imaging (TDI) and two-dimensional (2D) speckle-tracking echocardiography (STE) for screening, risk stratification, and guidance of management of patients with T2DM.
Publisher: Elsevier BV
Date: 07-2018
DOI: 10.1016/J.PEC.2018.02.001
Abstract: We conducted a systematic review to identify the strategies that have been recommended in the literature to facilitate shared decision-making regarding enrolment in pediatric oncology clinical trials. We searched seven databases for peer-reviewed literature, published 1990-2017. Of 924 articles identified, 17 studies were eligible for the review. We assessed study quality using the 'Mixed-Methods Appraisal Tool'. We coded the results and discussions of papers line-by-line using nVivo software. We categorized strategies thematically. Five main themes emerged: 1) decision-making as a process, 2) in iduality of the process 3) information provision, 4) the role of communication, or 5) decision and psychosocial support. Families should have adequate time to make a decision. HCPs should elicit parents' and patients' preferences for level of information and decision involvement. Information should be clear and provided in multiple modalities. Articles also recommended providing training for healthcare professionals and access to psychosocial support for families. High quality, in idually-tailored information, open communication and psychosocial support appear vital in supporting decision-making regarding enrollment in clinical trials. These data will usefully inform future decision-making interventions/tools to support families making clinical trial decisions. A solid evidence-base for effective strategies which facilitate shared decision-making is needed.
Publisher: Wiley
Date: 02-05-2016
DOI: 10.1002/PBC.26001
Publisher: Elsevier BV
Date: 11-2023
Publisher: Wiley
Date: 11-06-2019
DOI: 10.1002/PON.5109
Abstract: Families of a child with cancer can find the decision to enrol in a clinical trial challenging and often misunderstand key concepts that underpin trials. We pilot tested "Delta," an online and booklet decision aid for parents with a child with cancer, and adolescents with cancer, deciding whether or not to enrol in a clinical trial. We developed Delta in accordance with the International Patient Decision Aid Standards. We conducted a pre-post pilot with parents with a child, and adolescents, who had enrolled in a paediatric phase III clinical trial for newly diagnosed acute lymphoblastic leukaemia. Parents (n = 37) and adolescents (n = 3) completed a questionnaire before and after using Delta (either the website or booklet, based on their preference). Twenty-three parents (62.2%) and three adolescents (100%) reviewed the Delta website. Parents rated Delta as highly acceptable in regard to being clearly presented, informative, easy to read, useful, visually appealing, and easy to use. All participants reported that they would recommend Delta to others and that it would have been useful when making their decision. Parents' subjective (M To our knowledge, Delta is the first reported decision aid, available online and as a booklet, for parents and adolescents deciding whether or not to enrol in a paediatric oncology clinical trial. Our study suggests that Delta is acceptable, feasible, and potentially useful.
Publisher: JMIR Publications Inc.
Date: 25-10-2017
Publisher: Elsevier BV
Date: 09-2020
Publisher: Wiley
Date: 08-07-2023
DOI: 10.1111/DMCN.15695
Abstract: To explore the relationship between social care‐related quality of life (SCrQoL) for caregivers of a child with a developmental and epileptic encephalopathy (DEE such as SCN2A and Dravet syndrome) and health literacy, illness perceptions, and caregiver activation. As part of a larger pre‐post pilot study of an information linker service, caregivers completed a baseline questionnaire which included demographics and measures to assess SCrQoL, health literacy, illness perceptions, and caregiver activation. We used Spearman's Rho to determine relationships between variables. Seventy‐two caregivers completed the questionnaire. Total SCrQoL varied widely, ranging from an ‘ideal state’ to ‘high needs state’. Caregivers most frequently reported high needs regarding doing activities they enjoy and looking after themselves. Total SCrQoL was correlated with cognitive (r[70] = −0.414, p 0.000) and emotional representations of illness (r[70] = −0.503, p 0.000), but not coherence (r = −0.075, p = 0.529). Total SCrQoL was not correlated with health literacy (r[70] = 0.125, p = 0.295) or caregiver activation (r[70] = 0.181, p = 0.127). Future research should explore whether interventions that help caregivers cognitively reframe the negative experiences of having a child with a DEE, and support them to partake in activities they enjoy, boost their SCrQoL.
Publisher: Wiley
Date: 05-10-2018
DOI: 10.1111/JPC.14248
Abstract: Approximately 20-30% of children/adolescents with cancer will not respond to standard therapies. These children are usually offered experimental treatment in the form of an early-phase clinical trial. We examined the perspectives of health-care professionals (HCPs) regarding obtaining informed consent for early-phase trials in paediatric oncology. We collected survey data from 87 HCPs working in paediatric cancer centres across Australia and New Zealand. HCPs were, on average, 44 years old (range = 25-74), with 15.8 years' experience in paediatric oncology (range = 1-40). Few HCPs (17.4%) received training for early-phase trial consent however, most were willing to attend training (77.9%). HCPs (61.6%) reported that they informed families about early-phase trials without any attempt to influence their decision. However, 23.3% of HCPs reported that they informed families that their child would benefit. HCPs' main obstacle in obtaining consent was their perception of parents' eagerness to 'try anything' (52.3%). HCPs perceived that many parents misunderstood key clinical trials concepts, with 25.2% of HCPs believing that not being given clear information influenced parents' decisions. Physicians were more likely than social workers/nurses to inform families that other children will benefit from enrolment in the study. Social workers/nurses appeared to rate the chance of benefits for the patient higher than physicians. HCPs may experience difficulty conducting early-phase trial consultations and obtaining valid informed consent. Our study highlights the need for formal training for HCPs and additional patient education tools.
Publisher: Informa UK Limited
Date: 07-2015
DOI: 10.2147/COAYA.S85988
Publisher: BMJ
Date: 10-2022
DOI: 10.1136/BMJOPEN-2022-063249
Abstract: Developmental and epileptic encephalopathies (DEEs) are rare epilepsy conditions that collectively impact 1 in 2000 children. They are highly genetically heterogeneous, resulting in significant barriers to accurate and adequate information for caregivers. This can lead to increased distress and dissatisfaction with the healthcare system. To address this gap, we developed ‘GenE Compass’ to provide caregivers with the highest-quality possible, understandable and relevant information in response to specific questions about their child’s DEE. Using a mixed-method design, we will now pilot GenE Compass to evaluate the acceptability to caregivers and clinicians, feasibility and impact to caregivers. We will recruit 88 caregivers (estimated final s le of 50 at follow-up) who have a child under 18 years of age with a suspected or confirmed DEE diagnosis. Following consent and a baseline questionnaire (questionnaire 1 (Q1)), participants will be able to submit questions to GenE Compass over a 3-month period. After 3 months, participants will complete a follow-up questionnaire (Q2) and an optional telephone interview to answer the research questions. Primary outcomes are acceptability of GenE Compass and feasibility of delivering the intervention (eg, cost of the intervention, number of questions submitted and time taken to respond to questions). Secondary outcomes include the impact of GenE Compass on caregivers’ quality of life, information searching behaviours, perceptions of their child’s illness and activation. The study protocol (V.2, dated 16 September 2021) has been approved by the Sydney Children’s Hospitals Network Human Research Ethics Committee (ETH11277). The results will be disseminated in peer-reviewed journals and at scientific conferences. A lay summary will be disseminated to all participants. ACTRN12621001544864.
Publisher: Elsevier BV
Date: 03-2022
DOI: 10.1016/J.JADOHEALTH.2021.09.027
Abstract: Adolescence can be a challenging time, but even more so when diagnosed with a serious or chronic illness. Starlight Children's Foundation established the Livewire program after recognizing the unique needs of adolescents in hospitals. This article describes our experience of implementing an art-based project within the Livewire program, designed to facilitate the voice of adolescents with a serious or chronic illness and their siblings. We invited young people across Australia to contribute their artwork which would be used as the design for a deck of playing cards. The final 54 cards were a creative reflection of the unique interests, personalities, and experiences of 45 young people. In this article, we also share the experiences of two young people who contributed to this project. We conclude with our learnings in delivering an art-based project for young people that is not presented directly as "therapy".
Publisher: Mary Ann Liebert Inc
Date: 06-2016
Abstract: Health literacy is important for health outcomes in adults. However, little is known about the health literacy of adolescents and young adults (AYAs). The purpose of this study was to provide an updated systematic review examining health literacy among AYAs with and without chronic illness. Specifically, the review considered (1) what sources of health information AYAs use (2) how well AYAs are able to understand, communicate, and critically evaluate health-related information and (3) whether health literacy is associated with health behaviors and outcomes. A systematic search was conducted for literature published in peer-reviewed journals using Medline, Embase, and PsycINFO databases. Of 603 articles reviewed, 14 studies met the inclusion criteria, six of which examined health literacy in a chronic illness population. Studies reported high usage for information sources, though no clear links between source type and health literacy emerged. Adequate health literacy was reported in at least 60% of participants, though poor functional literacy was reported. Few studies explored communicative or critical health literacy those that did indicated that AYAs experience challenges in these domains. Poorer health literacy was associated with some adverse health outcomes, such as obesity and smoking. For AYAs with a chronic illness, there were mixed findings between health literacy and medication adherence. Understanding the challenges AYAs face with regards to complex developing communicative and critical health literacy skills is crucial. Due to the paucity of research in this field, addressing health literacy across all AYAs will provide a valuable step in guiding research in AYAs with cancer.
Publisher: Springer Science and Business Media LLC
Date: 18-03-2019
DOI: 10.1007/S00520-019-04728-X
Abstract: Few studies have addressed the way in which families of children with cancer make treatment decisions, and how we can meet parents' and young peoples' decisional involvement needs. We aimed to explore parents' and adolescents' views and perceptions of making medical decisions in pediatric oncology. We conducted semi-structured interviews with 25 parents of children diagnosed with cancer in the past 12 months, and 5 adolescents diagnosed in the past 12 months. Our interview schedule was underpinned by Elwyn and Miron-Shatz's decision-making model. The model acknowledges the deliberation (process of coming to a decision) and determination (making a choice) phases of decision-making. We conducted a thematic analysis. Our findings indicate that information provision is not enough to facilitate parents' decision-making involvement. Many parents sought additional information to meet their in idual needs and preferences. While many parents and young people desired decisional involvement, they trusted the doctors to make treatment decisions. Feelings of distress, inadequacy, and lack of choice impacted decision-making participation. Regardless, many parents in our study were satisfied with treatment decisions, but this was largely dependent on positive treatment outcomes. Our study contributes to understanding how families of a child with cancer make treatment decisions. Families tend to rely on doctors to make treatment decisions, but often seek additional information to help them feel involved in the decision process. Findings highlight that decision-making in pediatric oncology should focus on involving families in the deliberation phase, rather than just determination of choice.
Publisher: Sciedu Press
Date: 13-07-2016
DOI: 10.5430/IJH.V2N2P73
Publisher: MDPI AG
Date: 18-08-2022
DOI: 10.3390/JPM12081327
Abstract: Current literature/guidelines regarding the most appropriate term to communicate a cancer-related disease-causing germline variant in childhood cancer lack consensus. Guidelines also rarely address preferences of patients/families. We aimed to assess preferences of parents of children with cancer, genetics professionals, and pediatric oncologists towards terminology to describe a disease-causing germline variant in childhood cancer. Using semi-structured interviews we asked participants their most/least preferred terms from ‘faulty gene,’ ‘altered gene,’ ‘gene change,’ and ‘genetic variant,’ analyzing responses with directed content analysis. Twenty-five parents, 6 genetics professionals, and 29 oncologists participated. An equal number of parents most preferred ‘gene change,’ ‘altered gene,’ or ‘genetic variant’ (n = 8/25). Parents least preferred ‘faulty gene’ (n = 18/25). Half the genetics professionals most preferred ‘faulty gene’ (n = 3/6) however this was least preferred by the remaining genetics professionals (n = 3/6). Many oncologists most preferred ‘genetic variant’ (n = 11/29) and least preferred ‘faulty gene’ (n = 19/29). Participants across all groups perceived ‘faulty gene’ as having negative connotations, potentially placing blame/guilt on parents/children. Health professionals described challenges selecting a term that was scientifically accurate, easily understood and not distressing to families. Lack of consensus highlights the need to be guided by families’ preferred terminology, while providing accurate explanations regarding implications of genetic findings.
Publisher: Springer Science and Business Media LLC
Date: 23-08-2022
DOI: 10.1038/S41431-022-01170-2
Abstract: Genome and exome sequencing (GS/ES) are increasingly being used in pediatric contexts. We summarize evidence regarding the actual and perceived understanding of GS/ES of parents of a child offered testing for diagnosis and/or management of a symptomatic health condition. We searched four databases (2008–2021) and identified 1264 unique articles, of which 16 met inclusion criteria. We synthesized data from qualitative and quantitative studies and organized results using Ayuso et al. (2013)’s framework of key elements of information for informed consent to GS/ES. Many of the parents represented had prior experience with genetic testing and accessed a form of genetic counseling. Parents’ understanding was varied across the domains evaluated. Parents demonstrated understanding of the various potential direct clinical benefits to their child undergoing GS/ES, including in relation to other genetic tests. We found parents had mixed understanding of the nature of potential secondary findings, and of issues related to data privacy, confidentiality, and usage of sequencing results beyond their child’s clinical care. Genetic counseling consultations improved understanding. Our synthesis indicates that ES/GS can be challenging for families to understand and underscores the importance of equipping healthcare professionals to explore parents’ understanding of ES/GS and the implications of testing for their child.
Publisher: SAGE Publications
Date: 26-08-2019
Abstract: There is an increasing number of shared decision-making (SDM) interventions in paediatrics. However, there is little consensus as to the best instruments to assess the feasibility and impact of these interventions. This narrative review aims to answer: (1) what feasibility, knowledge and decision-making instruments have been used to assess paediatric SDM interventions and (2) what are the psychometric properties of used decision-making instruments, guided by the ‘consensus-based standards for the selection of health measurement instrument’ criteria. We conducted a review of the peer-reviewed literature. We identified 23 studies that evaluated a paediatric intervention to facilitate SDM for a specific health decision. Eighteen studies assessed intervention feasibility, with a wide variability in assessment between studies. Twelve studies assessed objective knowledge, and four studies assessed subjective knowledge with all but one study aggregating correct responses. We identified nine decision-making instruments that had been assessed psychometrically, although few had been thoroughly evaluated. The Decisional Conflict Scale was the most commonly-used instrument and the only instrument evaluated in paediatrics. Our study revealed a lack of consistency in the instruments used to evaluate decision-making interventions in paediatrics, making it difficult to compare interventions. We provide several recommendations for researchers to improve the assessment of SDM interventions in paediatrics.
Publisher: JMIR Publications Inc.
Date: 04-05-2018
DOI: 10.2196/RESPROT.9258
Publisher: Springer Science and Business Media LLC
Date: 19-01-2016
DOI: 10.1007/S00520-016-3077-6
Abstract: The aim of this study was to evaluate the feasibility and acceptability of "Cascade": an online, group-based, cognitive behavioral therapy intervention, delivered "live" by a psychologist, to assist parents of children who have completed cancer treatment. Forty-seven parents were randomized to Cascade (n = 25) or a 6-month waitlist (n = 22). Parents completed questionnaires at baseline, 1-2 weeks and 6 months post-intervention. Thirty parents completed full evaluations of the Cascade program (n = 21 randomized to Cascade, n = 9 completed Cascade post-waitlist). Ninety-six percent of Cascade participants completed the intervention (n = 24/25). Eighty percent of parents completed every questionnaire (mean completion time 25 min (SD = 12)). Cascade was described as at least "somewhat" helpful by all parents. None rated Cascade as "very/quite" burdensome. Parents reported that the "online format was easy to use" (n = 28, 93.3 %), "I learnt new skills" (n = 28, 93.3 %), and "I enjoyed talking to others" (n = 29, 96.7 %). Peer-to-peer benefits were highlighted by good group cohesion scores. Cascade is highly acceptable and feasible. Its online delivery mechanism may address inequities in post-treatment support for parents, a particularly acute concern for rural/remote families. Future research needs to establish the efficacy of the intervention. ACTRN12613000270718, www.anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12613000270718.
Publisher: Mary Ann Liebert Inc
Date: 02-2018
Abstract: To qualitatively examine the experiences of diagnosis and treatment, and attitudes toward ongoing healthcare of adolescent and young adult (AYA) survivors of AYA cancer, to determine barriers to healthcare engagement in the early survivorship period. Forty-two participants aged between 15 and 25 years were recruited between February 2013 and October 2015 as part of a larger Australia-wide study. This study analyzed data collected through a semistructured telephone interview. Interviews were recorded and transcribed verbatim and then coded line-by-line. Data were analyzed for emergent themes using the qualitative software NVivo. Many participants demonstrated a good understanding of their cancer diagnosis and treatment. Participants expressed high levels of confidence in their healthcare teams and demonstrated a conscientious approach to their ongoing cancer-specific and general healthcare. However, most AYAs had expectations of the cancer journey that differed from the realities of their experiences. The results further highlight the crucial role of healthcare professionals in ensuring AYA cancer patients have accurate expectations of diagnosis and treatment, and develop a strong working knowledge of their disease that is maintained into survivorship. AYA cancer survivors may require ongoing education and support to stay engaged with long-term follow-up care.
Publisher: Informa UK Limited
Date: 07-06-2016
DOI: 10.1080/07347332.2016.1196806
Abstract: Cancer diagnoses and treatment may have long-term effects on fertility. Semistructured interviews were administered to young cancer survivors (<20 years) and their parents (n = 97). Fertility related concerns were reported by 45 participants (46.4%). Themes included: distress regarding potential infertility the effect of infertility on future relationships, self-esteem, and miscommunications/confusion about fertility status access to fertility testing and preservation options. Parents also reported challenges regarding how and when it was developmentally appropriate to talk to their children about fertility. The development of comprehensive consumer-driven approaches to managing the fertility concerns of young survivors and their families is essential.
Publisher: Springer Science and Business Media LLC
Date: 19-09-2023
No related grants have been discovered for Eden Robertson.