Lauren Kelada

and 10 more

Background: Hard-to-treat childhood cancers are those where standard treatment options do not exist and prognosis is poor. Healthcare professionals (HCPs) are responsible for communicating with families about prognosis and complex experimental treatment. 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. Method: We interviewed Australian HCPs who had direct responsibilities in managing children/adolescents with a hard-to-treat cancer within the past 24 months. Interviews were analysed 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 under-utilised 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 junior oncologists supported the development of communication training resources, more so than senior oncologists. Conclusion(s): 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 should aim to prepare them for common challenges, and to foster greater multidisciplinary collaboration.

Tamarah Katz E

and 5 more

Introduction: Gastrointestinal (GI) symptoms are common in individuals with Cystic Fibrosis (CF). International research has highlighted that GI care for this group of patients is lacking. Gastroenterology services to CF clinics across Australasia are yet to be examined. This study aimed to describe the current service delivery model and to identify areas for improvement that may lead to positive patient outcomes. Methods: CF clinicians (dietitians, clinical nurse consultants, respiratory consultants), gastroenterologists (GE), and patients or their carers from Australia and New Zealand (NZ) were surveyed online to gather their opinions on CF gastroenterology services provided in their region. Data were analysed using descriptive statistics (frequencies and percentages). Likert scale questions were analysed by grouping responses 1-5 and 6-10, presented alongside the median and interquartile range (IQR). Mann-Whitney U and chi-square tests were used to look at differences between stakeholder groups. Results: One hundred and fifty-seven health professionals and 172 patients or their carers completed the survey. Results showed that the current GI model of care is predominantly a publicly funded service delivered outside of CF clinic time. GE are largely not integrated into the CF team and report a lack of training opportunities. There is a higher level of dissatisfaction with the current service model in NZ than Australia. Discussion: No stakeholder group deemed the current CF gastroenterology service model as adequate, leaving opportunity for transformations in this field. Ideally the data from this study will invigorate the need for promotion and integration of GI services that would ultimately benefit the whole CF community.

Catharine Fleming

and 5 more

Background The long-term impact of childhood cancer treatment on dietary intake is likely to be complex and the length of time dietary behaviours are affected after childhood cancer treatment is unknown. Aim The aim of this study was to determine the diet quality in childhood cancer survivors recently off treatment and identify possible contributing factors that may affect diet quality in this population. Methods Participants were 65 parents and/or carers of childhood cancer survivors (CCS) (aged 2-18 years), recently off treatment and 81 age-matched controls. Methods Participants completed two self-administered dietary intake and eating behaviour questionnaires. Study data was explored to determine between group differences, bivariate analysis using Spearman’s correlations was used to determine the relationship between diet quality and identified variables, and hierarchical cluster analysis was completed to characterise specific variables into clusters. Results CCS had a significantly poorer diet quality score than the age-matched controls (t=-2.226, p=0.028). Childhood cancer survivors had significantly higher parent-reported rates of ‘picky eating’ behaviour than the control group (t=0.106 p=0.044). Factors such as picky eating, emotional overeating and Body Mass Index z-score appeared to drive diet quality in survivors. Conclusions A CCS with picky eating behaviours could avoid complete food groups, have strong food preferences/aversions and over- consume high energy foods to maintain their energy intake, possibly affecting diet quality. The outcomes highlighted the need for a tailored intervention aimed at improving healthy eating behaviours in CCS after treatment for cancer.

Maria Schaffer

and 10 more

Purpose: The long-term management of childhood cancer survivors is complex. Electronic health (eHealth) technology has the potential to significantly improve the management of late effects for childhood cancer survivors and assist their General Practitioners (GP) to coordinate their care. We assessed the acceptability of and perceived benefits and barriers to eHealth use amongst survivors, parents, and GPs. Methods: We conducted semi-structured telephone interviews with survivors of childhood cancer, parents of childhood cancer survivors and their nominated GP. We described a hypothetical eHealth tool and asked participants how likely they would use the tool to manage their survivorship care and their perceived benefits and concerns for use of the tool. We used content analysis to synthesise the data using QSR NVivo12. Results: We interviewed 31 survivors (mean age: 27.0), 29 parents (survivors’ mean age: 12.6) and 51 GPs (mean years practising: 28.2). Eighty-five percent of survivors and parents (n=51), and 75% of GPs (n=38) indicated that they would be willing to use an eHealth tool. Survivors and parents reported that an eHealth tool would increase their confidence in their ability, and their GP’s ability, to manage their survivorship care. GPs agreed that an eHealth tool would provide easier access to survivors’ medical information and increase their capacity to provide support during survivorship. 7% of GPs (n= 4) and 43% of survivors (n=26) reported being hesitant to use eHealth tools due to privacy/security concerns. Conclusion: Overall, eHealth tools were reported to be acceptable to childhood cancer survivors, their parents, and their GPs.

Antoinette Anazodo

and 8 more

Background: Reproductive complications for cancer survivors are identified as one of the top unmet needs. Current models of care do not routinely incorporate reproductive follow-up for cancer patients. The Kids Cancer Centre have had a one stop survivorship clinic which includes a gynecologist and fertility specialist. Methodology: To inform the future development of our reproductive survivorship care we audited this service over a twelve-year period reviewing who used the service and their gonadotoxic risk, their reproductive needs and concerns. Main results: 278 patients were seen (397 consultations), including 189 female patients (68.0%). Median age at follow up was 25.0 years (range=6-50) and they were 19.2 years from their primary diagnosis (range=3-46). We identified 10 themes of reproductive need. Patients had on average 2.5 reproductive concerns documented per consultation (range 1-5). The three most commonly documented concerns at initial consultation related to fertility status (43.9%), endocrine dysfunction (35.3%), and contraception advice (32.4%). In patients younger than 25 years discussions were predominately about endocrine dysfunction, fertility status and contraception, while dominant themes for 26-35 years olds were fertility status, reproductive-related health prevention strategies, contraception and endocrine dysfunction. Survivors aged 36-45 prioritised fertility status, pregnancy, and contraception. Fertility preservation (p=0.05), preventative health strategies (p=0.001), and contraception advice (p<0.001) were more commonly discussed by females than males. Conclusion: Longitudinal reproductive follow up care is important, as patients have a number of ongoing reproductive concerns which change over time. Our data can assist in informing the model of care.