PARENTS' AND PATIENTS' PERSPECTIVES, EXPERIENCES, AND PREFERENCES FOR GERMLINE GENETIC OR GENOMIC TESTING OF CHILDREN WITH CANCER: A SYSTEMATIC REVIEW.

PURPOSE: Germline testing in pediatric cancer presents opportunities and challenges. Understanding family perspectives, experiences, and preferences will optimize integration into routine care. METHODS: Following PRISMA guidelines, we searched four databases for studies exploring perspectives, experiences, and preferences of parents/caregivers and/or patients regarding germline testing of children with cancer. Qualitative and quantitative data was extracted, organized, and summarized by research question and themes. RESULTS: We identified 2286 unique articles, of which 24 were included. Interest in and uptake of testing was high. Families were motivated by altruism and a desire for inheritance/causation information. Testing barriers included psychological concerns, timing of the testing approach if offered at diagnosis or in a high-risk cancer setting and privacy/discrimination. Testing experiences highlighted challenges yet also positive impacts, with results providing psychological relief and informing proactive decision-making. Timing preferences varied, however allowing time to adjust to a new diagnosis was a common theme. Most wanted to receive as many germline sequencing-related results as possible. CONCLUSION: Findings underscore the importance of integrating germline analyses into pediatric cancer care with flexibility and support for families facing challenges. Where possible, consent should be provided at a time that suits each family's situation with access to information aligning with their needs and preferences. PROSPERO: CRD42023444890.

'High hopes for treatment': Australian stakeholder perspectives of the clinical translation of advanced neurotherapeutics for rare neurological diseases.

INTRODUCTION: Advanced therapies offer unprecedented opportunities for treating rare neurological disorders (RNDs) in children. However, health literacy, perceptions and understanding of novel therapies need elucidation across the RND community. This study explored healthcare professionals' and carers' perspectives of advanced therapies in childhood-onset RNDs. METHODS: In this mixed-methodology cross-sectional study, 20 healthcare professionals (clinicians, genetic counsellors and scientists) and 20 carers completed qualitative semistructured interviews and custom-designed surveys. Carers undertook validated psychosocial questionnaires. Thematic and quantitative data analysis followed. RESULTS: Participants described high positive interest in advanced therapies, but low knowledge of, and access to, reliable information. The substantial 'therapeutic gap' and 'therapeutic odyssey' common to RNDs were recognised in five key themes: (i) unmet need and urgency for access; (ii) seeking information; (iii) access, equity and sustainability; (iv) a multidisciplinary and integrated approach to care and support and (v) difficult decision-making. Participants were motivated to intensify RND clinical trial activity and access to advanced therapies; however, concerns around informed consent, first-in-human trials and clinical trial procedures were evident. There was high-risk tolerance despite substantial uncertainties and knowledge gaps. RNDs with high mortality, increased functional burdens and no alternative therapies were consistently prioritised for the development of advanced therapies. However, little consensus existed on prioritisation to treatment access. CONCLUSIONS: This study highlights the need to increase clinician and health system readiness for the clinical translation of advanced therapeutics for RNDs. Co-development and use of educational and psychosocial resources to support clinical decision-making, set therapeutic expectations and promotion of equitable, effective and safe delivery of advanced therapies are essential. PATIENT OR PUBLIC CONTRIBUTION: Participant insights into the psychosocial burden and information need to enhance the delivery of care in this formative study are informing ongoing partnerships with families, including co-production and dissemination of psychoeducational resources featuring their voices hosted on the Sydney Children's Hospitals Network website SCHN Brain-Aid Resources.

Parents' and adolescents' perspectives and understanding of information about childhood cancer precision medicine.

BACKGROUND: 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. METHODS: 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. RESULTS: 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 diverse 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. CONCLUSIONS: Our study revealed gaps in families' understanding of childhood cancer precision medicine. We highlighted areas for potential intervention such as through targeted information resources. PLAIN LANGUAGE SUMMARY: 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.

Parents' expectations, preferences, and recall of germline findings in a childhood cancer precision medicine trial.

BACKGROUND: Germline genome sequencing in childhood cancer precision medicine trials may reveal pathogenic or likely pathogenic variants in cancer predisposition genes in more than 10% of children. These findings can have implications for diagnosis, treatment, and the child's and family's future cancer risk. Understanding parents' perspectives of germline genome sequencing is critical to successful clinical implementation. METHODS: A total of 182 parents of 144 children (<18 years of age) with poor-prognosis cancers enrolled in the Precision Medicine for Children with Cancer trial completed a questionnaire at enrollment and after the return of their child's results, including clinically relevant germline findings (received by 13% of parents). Parents' expectations of germline genome sequencing, return of results preferences, and recall of results received were assessed. Forty-five parents (of 43 children) were interviewed in depth. RESULTS: At trial enrollment, most parents (63%) believed it was at least "somewhat likely" that their child would receive a clinically relevant germline finding. Almost all expressed a preference to receive a broad range of germline genomic findings, including variants of uncertain significance (88%). Some (29%) inaccurately recalled receiving a clinically relevant germline finding. Qualitatively, parents expressed confusion and uncertainty after the return of their child's genome sequencing results by their child's clinician. CONCLUSIONS: Many parents of children with poor-prognosis childhood cancer enrolled in a precision medicine trial expect their child may have an underlying cancer predisposition syndrome. They wish to receive a wide scope of information from germline genome sequencing but may feel confused by the reporting of trial results.

Hopes, concerns, satisfaction and regret in a precision medicine trial for childhood cancer: a mixed-methods study of parent and patient perspectives.

BACKGROUND: Paediatric precision oncology aims to match therapeutic agents to driver gene targets. We investigated whether parents and patients regret participation in precision medicine trials, particularly when their hopes are unfulfilled. METHODS: Parents and adolescent patients completed questionnaires at trial enrolment (T0) and after receiving results (T1). Parents opted-in to an interview at T1. Bereaved parents completed a questionnaire 6-months post-bereavement (T1B). We analysed quantitative data with R and qualitative data thematically with NVivo, before integrating all data for interpretation. RESULTS: 182 parents and 23 patients completed T0; 108/182 parents and 8/23 patients completed T1; 27/98 bereaved parents completed T1B; and 45/108 parents were interviewed. At enrolment, participants held concurrent hopes that precision medicine would benefit future children and their child. Participants expressed concern regarding wait-times for receipt of results. Most participants found the trial beneficial and not burdensome, including bereaved parents. Participants reported high trial satisfaction (median scores: parents: 93/100; patients: 80/100). Participants expressed few regrets (parent median scores: parents: 10/100; bereaved parents: 15/100; patient regret: 2/8 expressed minimal regret). CONCLUSIONS: Even when trial outcomes did not match their hopes, parents and patients rarely regretted participating in a childhood cancer precision medicine trial. These data are critical for integrating participants' views into future precision medicine delivery.

'Like ships in the night': A qualitative investigation of the impact of childhood cancer on parents' emotional and sexual intimacy.

BACKGROUND: Childhood cancer is highly distressing for families and can place strain on parents' relationships. Parental functioning and cohesiveness are important predictors of family functioning and adaptation to stress. This qualitative study investigated the perceived impact of childhood cancer on parents' relationship with their partner, with a focus on emotional and sexual intimacy. METHODS: We conducted semi-structured interviews with 48 parents (42 mothers, six fathers) of children under the age of 18 who had completed curative cancer treatment. We analysed the interviews using thematic analysis. RESULTS: At interview, parents were on average 40.7 years old (SD = 5.5, range: 29-55 years), and had a child who had completed cancer treatment between 3 months and 10.8 years previously (M = 22.1 months). All participants were living with their partner in a married/de facto relationship. Most parents reported that their child's cancer treatment had a negative impact on emotional and sexual intimacy with their partner, with some impacts extending to the post-treatment period. Reasons for compromised intimacy included exhaustion and physical constraints, having a shifted focus, and discord arising from different coping styles. Some parents reported that their relationship strengthened. Parents also discussed the impact of additional stressors unrelated to the child's cancer experience. CONCLUSIONS: Parents reported that childhood cancer had a negative impact on aspects of emotional and sexual intimacy, although relationship strengthening was also evident. It is important to identify and offer support to couples who experience ongoing relationship stress, which may have adverse effects on family functioning and psychological wellbeing into survivorship.

'Advocacy groups are the connectors': Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics.

INTRODUCTION: Biomedical progress has facilitated breakthrough advanced neurotherapeutic interventions, whose potential to improve outcomes in rare neurological diseases has increased hope among people with lived experiences and their carers. Nevertheless, gene, somatic cell and other advanced neurotherapeutic interventions carry significant risks. Rare disease patient organizations (RDPOs) may enhance patient experiences, inform expectations and promote health literacy. However, their perspectives are understudied in paediatric neurology. If advanced neurotherapeutics is to optimize RDPO contributions, it demands further insights into their roles, interactions and support needs. METHODS: We used a mixed-methodology approach, interviewing 20 RDPO leaders representing paediatric rare neurological diseases and following them up with two online surveys featuring closed and open-ended questions on advanced neurotherapeutics (19/20) and negative mood states (17/20). Qualitative and quantitative data were analysed using thematic discourse analysis and basic descriptive statistics, respectively. RESULTS: Leaders perceived their roles to be targeted at educational provision (20/20), community preparation for advanced neurotherapeutic clinical trials (19/20), information simplification (19/20) and focused research pursuits (20/20). Although most leaders perceived the benefits of collaboration between stakeholders, some cited challenges around collaborative engagement under the following subthemes: conflicts of interest, competition and logistical difficulties. Regarding neurotherapeutics, RDPO leaders identified support needs centred on information provision, valuing access to clinician experts and highlighting a demand for co-developed, centralized, high-level and understandable, resources that may improve information exchange. Leaders perceived a need for psychosocial support within themselves and their communities, proposing that this would facilitate informed decision-making, reduce associated psychological vulnerabilities and maintain hope throughout neurotherapeutic development. CONCLUSION: This study provides insights into RDPO research activities, interactions and resource needs. It reveals a demand for collaboration guidelines, central information resources and psychosocial supports that may address unmet needs and assist RDPOs in their advocacy. PATIENT OR PUBLIC CONTRIBUTION: In this study, RDPO leaders were interviewed and surveyed to examine their perspectives and roles in advanced neurotherapeutic development. Some participants sent researchers postinterview clarification emails regarding their responses to questions.

Health service and medication use of parents of childhood cancer survivors: a controlled comparison study.

BACKGROUND: Parents of childhood cancer survivors may be vulnerable to experiencing poor health outcomes, but little is known about how these parents use healthcare. This study investigated the nature and extent of survivors' parents' healthcare and medication use relative to a comparison group. We also examined whether demographic or cancer-related factors were related to healthcare use and whether healthcare use was associated with parents' general functioning. METHODS: We conducted a cross-sectional study involving 55 parents of cancer survivors recruited through eight Australian hospitals, and 135 parents of children without a cancer diagnosis, through an online recruitment platform. Participants responded to a questionnaire assessing their health service usage, regular medications, general functioning (engagement activities including work/study) and anxiety and depression symptoms (using PROMIS short forms). We performed regression analysis to determine factors related to healthcare and medication use in parents of survivors. RESULTS: More parents of survivors reported accessing mental health services than comparison parents (56% vs. 33%, p=.003), mainly due to their use of social workers. Fewer parents of survivors reported accessing other community health services, particularly general practitioners (51% vs. 78%, p<.001). Having a child survivor who was male was associated with greater use of community health services (B= -0.67, p=.008). No other demographic or cancer-related variables were associated with health service use. Health service use was not associated with general functioning, but greater medication use was associated with higher anxiety scores (B = 1.41, p=.008). CONCLUSION: Parents of childhood cancer survivors showed different patterns of health service use relative to comparison parents, but the extent of their use was not significantly linked with demographic or cancer-related variables. Comprehensive assessment of parents' needs in clinical encounters remains vital to identify and appropriately match support needs with available services.

Variables associated with grief and personal growth following the death of a child from cancer: A mixed method analysis.

This mixed method study explored parent and child characteristics that impact grief and personal growth in parents (n = 119) after a child dies from cancer in Australia. Medical components of a child's cancer care including radiation treatment, referral to palliative care, and location of death had a significant impact on levels of grief. Parents' gender, religious affiliation, and education level had a significant impact on levels of personal growth. This study further enhances our understanding of the impact of specific parent and child characteristics throughout a child's cancer treatment and end of life that may influence their families' experience of bereavement.

Survivorship Care Plans in Cancer: A Meta-Analysis and Systematic Review of Care Plan Outcomes.

BACKGROUND: The Institute of Medicine recommends that survivorship care plans (SCPs) be included in cancer survivorship care. Our meta-analysis compares patient-reported outcomes between SCP and no SCP (control) conditions for cancer survivors. Our systematic review examines the feasibility of implementing SCPs from survivors' and health care professionals' perspectives and the impact of SCPs on health care professionals' knowledge and survivorship care provision. METHODS: We searched seven online databases (inception to April 22, 2018) for articles assessing SCP feasibility and health care professional outcomes. Randomized controlled trials comparing patient-reported outcomes for SCP recipients versus controls were eligible for the meta-analysis. We performed random-effects meta-analyses using pooled standardized mean differences for each patient-reported outcome. RESULTS: Eight articles were eligible for the meta-analysis (n = 1,286 survivors) and 50 for the systematic review (n = 18,949 survivors; n = 3,739 health care professionals). There were no significant differences between SCP recipients and controls at 6 months postintervention on self-reported cancer and survivorship knowledge, physical functioning, satisfaction with information provision, or self-efficacy or at 12 months on anxiety, cancer-specific distress, depression, or satisfaction with follow-up care. SCPs appear to be acceptable and potentially improve survivors' adherence to medical recommendations and health care professionals' knowledge of survivorship care and late effects. CONCLUSION: SCPs appear feasible but do not improve survivors' patient-reported outcomes. Research should ascertain whether this is due to SCP ineffectiveness, implementation issues, or inappropriate research design of comparative effectiveness studies. IMPLICATIONS FOR PRACTICE: Several organizations recommend that cancer survivors receive a survivorship care plan (SCP) after their cancer treatment; however, the impact of SCPs on cancer survivors and health care professionals is unclear. This systematic review suggests that although SCPs appear to be feasible and may improve health care professionals' knowledge of late effects and survivorship care, there is no evidence that SCPs affect cancer survivors' patient-reported outcomes. In order to justify the ongoing implementation of SCPs, additional research should evaluate SCP implementation and the research design of comparative effectiveness studies. Discussion may also be needed regarding the possibility that SCPs are fundamentally ineffective.

Financial toxicity of childhood cancer and changes to parents' employment after treatment completion.

OBJECTIVE: Childhood cancer can have short- and long-term impacts on parents' finances and employment. It is important to understand how families adjust to the financial and employment changes caused by childhood cancer, the ongoing impacts after treatment completion, and which families need more targeted support. Qualitative research is necessary to facilitate an in-depth understanding of the employment and financial impacts on families and to capture parents' complex and nuanced experiences and perspectives. METHODS: We interviewed 56 parents of childhood cancer survivors (M = 2.13 years after treatment completion; 89% mothers) using the vocational and financial impact section of the Psychosocial Adjustment to Illness Scale-Carer Interview Form. We analyzed interviews using content analysis. RESULTS: Parents reported multiple sources of financial toxicity including travel to and from the hospital and needing to reduce their working hours during their child's cancer treatment. Workplace flexibility was an important factor to protect against unwanted vocational changes. After treatment completion, families living in low socioeconomic areas commonly reported ongoing financial difficulties. Mothers, particularly those who were on maternity leave when their child was diagnosed with cancer, reported ongoing employment impacts including unemployment. CONCLUSIONS: Clinical staff including social workers could more consistently assess families' financial distress and refer to professional services who can offer guidance for financial decision-making as standard care. Flexible workplace agreements appear important for parents of children with cancer. Our findings can assist organizations to understand that cancer-related disruptions are likely to continue after treatment completion, and therefore should offer benefits to parents where possible.

Understanding parents' communication experiences in childhood cancer: a qualitative exploration and model for future research.

PURPOSE: Following their child's cancer diagnosis, parents must rapidly familiarize themselves with cancer-specific information and the health-care setting. Theory-driven research is needed to understand and address parents' difficulties when interacting with health-care professionals (HCPs). We examined parents' health-care experiences during and after the child's cancer treatment. METHODS: We recruited parents of children/adolescents (aged < 18 years) who had recently completed cancer treatment with curative intent from eight Australian hospitals. We conducted in-depth interviews using the psychosocial adjustment to illness scale while recruiting for the "CASCADE" survivorship intervention. We used grounded theory to explore parents' health-care experiences. RESULTS: Fifty-two mothers and six fathers of survivors (mean age at diagnosis = 5.1 years, time since treatment = 1.9 years) participated. Parents' experiences were characterized by (1) positive and negative interactions, (2) attitudes towards health care and HCPs, (3) trust and mistrust in the doctor-parent relationship, and (4) parents' engagement in care. Parents built trust with HCPs, who seemed approachable and personable. Although parents' experience was overall very positive, nearly half of parents reported negative interactions and mistrust. Parents rationalized negative experiences as caused by constraints in the health-care setting. Most parents felt support ended prematurely. We propose a new model accounting for these experiences and identifying potential underlying mechanisms. CONCLUSIONS: Depending on their degree of trust, parents followed recommendations more closely (high trust) or focused on being advocates for their child (low trust). Parents minimized the impact of negative HCP interactions through internal, rationalizing processes. Our findings demonstrate parents' flexibility in acting as a dynamic buffer between HCP-interactions and their child.

Brief report: Bereaved parents informing research design: The place of a pilot study.

BACKGROUND: Risk minimization in research with bereaved parents is important. However, little is known about which research methods balance the sensitivity required for bereaved research participants and the need for generalizable results. AIM: To explore parental experiences of participating in mixed method bereavement research via a pilot study. DESIGN: A convergent parallel mixed method design assessing bereaved parents' experience of research participation. SETTING/PARTICIPANTS: Eleven parents whose child was treated for cancer at The Royal Children's Hospital, Brisbane completed the questionnaire/interview being piloted (n = 8 mothers; n = 3 fathers; >6 months and <6 years bereaved). Of these, eight parents completed the pilot study evaluation questionnaire, providing feedback on their experience of participation. RESULTS: Participants acknowledged the importance of bereaved parents being central to research design and the development of bereavement programs. Sixty-three per cent (n = 5/8) of parents described completion of the questionnaire as 'not at all/a little bit' of a burden. Seventy-five per cent (n = 6/8) of parents opting into the telephone interview described participation as 'not at all/a little bit' of a burden. When considering the latest timeframes for participation in bereavement research 63% (n = 5/8) of parents indicated 'no endpoint.' Findings from the pilot study enabled important adjustments to be made to a large-scale future study. CONCLUSIONS: As a research method, pilot studies may be utilized to minimize harm and maximize the potential benefits for vulnerable research participants. A mixed method approach allows researchers to generalize findings to a broader population while also drawing on the depth of the lived experience.

Abstract recall of a happy memory to repair sad mood in dysphoria: A possible link to negative cognition.

The capacity to repair sad mood through the deliberate recall of happy memories has been found to be impaired in dysphoric individuals. Rumination, or adopting an abstract processing mode, has been proposed as a possible mechanism underpinning this effect. In low and high dysphoric participants, we examined the relative consequences of adopting an abstract or concrete processing mode during happy memory recall or engaging in distraction for (1) mood repair and (2) cognitive content. Recalling a happy memory in either an abstract or concrete way resulted in greater happiness than distraction. Engaging in abstract recall of a happy memory resulted in high dysphoric participants generating negative evaluations and negative generalisations. These findings raise the interesting possibility that abstract processing of positive memories has the potential to generate negative cognition.

Promise and Perils of Precision Oncology for Patients With Pediatric and Young Adult Sarcomas.

The completion of multiple national pediatric precision oncology platform trials and the incorporation of standardized molecular profiling into the diagnostic care of pediatric and young adult patients with sarcomas have proven the feasibility and potential of the approach. In this work, we explore the current state of the art of precision oncology for pediatric and young adults with sarcoma. We highlight important lessons learned and the challenges that should be addressed in the next generation of trials. The chapter outlines current efforts to improve standardization of molecular assays, harmonization of data collection, and novel molecular tools such as cell-free DNA analyses. Finally, we discuss the impacts and psychosocial outcomes experienced by patients and communication strategies for providers.

It provides families with other avenues for treatment when there are no other options Surgeons' perspectives of being part of a precision medicine trial for poor prognosis paediatric cancer patients: A short report.

OBJECTIVE: Precision medicine is transforming cancer treatment, yet the perspectives of surgeons who often play a critical role in the delivery of precision medicine remain understudied. METHODS: We conducted semi-structured interviews with 13 surgeons involved in a precision medicine trial for children with poor prognosis cancer. We explored knowledge of genetics, confidence with somatic and germline results, ratings of benefit to stakeholders and willingness to undertake surgical procedures. RESULTS: Surgeons generally had positive attitudes towards precision medicine but expressed concerns about families' unrealistic expectations, mixed opinions on the benefits and the use of research-only biopsies. Most surgeons rated their genetics knowledge as 'good' (69%) and felt 'very confident' in identifying genetic specialists (66%), but 'not confident' (66.6%) in making treatment recommendations. Surgeons' willingness to undertake a procedure was influenced by potential patient benefit. CONCLUSIONS: Our findings support the need for more workforce and training support for surgeons to fully engage with precision medicine.

The feasibility and acceptability of collecting psychosocial outcome measures embedded within a precision medicine trial for childhood cancer.

BACKGROUND: Patient-reported outcomes measures (PROMs) are increasingly being collected within cancer clinical trials, yet limited literature on the feasibility and acceptability of doing so. METHODS: We collected parent-proxy and adolescent (≥12 years old) PROMs through a longitudinal, psychosocial sub-study ('PRISM-Impact') embedded in a precision medicine trial for children with poor prognosis cancer ('PRISM'). We report on feasibility (response, participation, and attrition rates; follow-up and responding to elevated distress) and acceptability (parents' perceived benefit/burden of participation; and impact on decision to participate in PRISM) of PRISM-Impact. RESULTS: Over the reporting period, 462 families were eligible for PRISM-Impact. Family and adolescent response rates were 53% and 45%, respectively. Parents whose child had relapsed were more likely to participate in PRISM-Impact than parents whose child had not (p < 0.001). Parent and adolescent attrition rates were 30% and 56% respectively. We conducted 478 calls for intake and to follow-up on missing questionnaires, and 122 calls to respond to elevated distress. Parents reported wanting to participate in PRISM-Impact for altruistic reasons and because they valued psychosocial research. Parents reported little-to-no burden and some benefit from participating in PRISM-Impact, with little change in ratings overtime. Most parents felt that participating in PRISM-Impact did not impact their desire to participate in PRISM (72%), with some feeling more eager to participate (19%). CONCLUSIONS: PRISM-Impact response rates were comparable to other psycho-oncology studies, despite the poor prognosis population. Integration of PROMs within a paediatric oncology trial is acceptable to parents, and may provide a more comprehensive assessment of the impact of trial participation.

Precision Medicine Is Changing the Roles of Healthcare Professionals, Scientists, and Research Staff: Learnings from a Childhood Cancer Precision Medicine Trial.

Precision medicine programs aim to utilize novel technologies to identify personalized treatments for children with cancer. Delivering these programs requires interdisciplinary efforts, yet the many groups involved are understudied. This study explored the experiences of a broad range of professionals delivering Australia's first precision medicine trial for children with poor-prognosis cancer: the PRecISion Medicine for Children with Cancer (PRISM) national clinical trial of the Zero Childhood Cancer Program. We conducted semi-structured interviews with 85 PRISM professionals from eight professional groups, including oncologists, surgeons, clinical research associates, scientists, genetic professionals, pathologists, animal care technicians, and nurses. We analyzed interviews thematically. Professionals shared that precision medicine can add complexity to their role and result in less certain outcomes for families. Although many participants described experiencing a greater emotional impact from their work, most expressed very positive views about the impact of precision medicine on their profession and its future potential. Most reported navigating precision medicine without formal training. Each group described unique challenges involved in adapting to precision medicine in their profession. Addressing training gaps and meeting the specific needs of many professional groups involved in precision medicine will be essential to ensure the successful implementation of standard care.