"I Didn't Know What I Didn't Know:" Assessment of Adolescent Oncology Patient Engagement in Decision-Making.

INTRODUCTION: Little is known about the best way to engage an adolescent oncology patient in decision-making. To integrate adolescent oncology patients most effectively in decision-making, it is important to understand their perceptions not only as adolescents but also as adult survivors who have had time to reflect upon their experience. The purpose of this study is to explore perceptions of survivors of pediatric cancer to better understand their attitudes toward participation in decision-making, decisional regret, and use of decision-support tools. METHODS: An electronic survey tool, containing open- and closed-ended responses, was distributed to adult cancer survivors diagnosed and treated for cancer between the ages of 9 and 18 at a Midwestern, Comprehensive Cancer Center within a tertiary care academic hospital. RESULTS: Seventy responses were received. Nearly all respondents (96%) reported that decisions made on their behalf were consistent with their desires most/all the time. Almost one-fifth felt that increased involvement would have intensified their anxiety. Eighty-five percent did not regret choices made about their cancer treatment, and 88% would have made the same choices again. Respondents desired more targeted information on the long-term impacts of treatment (i.e., infertility, memory difficulties, mental health concerns), and they highlighted the importance of communication in the decision-making process. CONCLUSIONS: Adolescents want to participate in the decision-making process in a way that accommodates their understanding of the pathology and potential impacts of treatment. Our results suggest that developing a simple intervention to help facilitate provision of such anticipatory guidance may be helpful.

Evaluation of a Novel Question Prompt List in Pediatric Surgical Oncology.

INTRODUCTION: Parents of children with cancer describe interactions with clinicians as emotionally distressing. Patient engagement in treatment discussions decreases decisional conflict and improves decision quality which may limit such distress. We have shown that parents prefer to engage surgeons by asking questions, but parents may not know what to ask. Question Prompt Lists (QPLs), structured lists of questions designed to help patients ask important questions, have not been studied in pediatric surgery. We developed a QPL designed to empower parents to ask meaningful questions during pediatric surgical oncology discussions. We conducted a mixed methods analysis to assess the acceptability, appropriateness, and feasibility of using the QPL. METHODS: Key stakeholders at an academic children's hospital participated in focus groups to discuss the QPL. Focus groups were recorded and transcribed. Participants were surveyed regarding QPL acceptability, appropriateness, and feasibility. Thematic content analysis of transcripts was performed. RESULTS: Four parents, five nurses, five nurse practitioners, five oncologists, and four surgeons participated. Seven key themes were identified: (1) QPL as a tool of empowerment; (2) stick to the surgical details; (3) QPLs can impact discussion quality; (4) time consuming, but not overly disruptive; (5) parental emotion may impact QPL use; (6) provide QPLs prior to surgical consultation in both print and digital formats; and (7) expansion of QPLs to other disciplines. Over 70% of participants agreed that the QPL was acceptable, appropriate, and feasible. CONCLUSIONS: Our novel QPL is acceptable, appropriate, and feasible to use with parents of pediatric surgical oncology patients.

Empowering Parents of Pediatric Surgical Oncology Patients Through Collaborative Engagement with Surgeons.

BACKGROUND: Ninety percent of parents of pediatric oncology patients report distressing, emotionally burdensome healthcare interactions. Assuring supportive, informative treatment discussions may limit parental distress. Here, we interview parents of pediatric surgical oncology patients to better understand parental preferences for surgical counseling. METHODS: We interviewed 10 parents of children who underwent solid tumor resection at a university-based, tertiary children's hospital regarding their preferences for surgical discussions. Thematic content analysis of interview transcripts was performed using deductive and inductive methods. RESULTS: Three main themes were identified: (1) the emotional burden of a pediatric cancer diagnosis; (2) complexities of treatment discussions; (3) collaborative engagement between parents and surgeons. Within the collaborative engagement theme, there were four sub-themes: (1) variable informational needs; (2) parents as advocates; (3) parents as gatekeepers of information delivery to their children, family, friends, and community; (4) parental receptivity to structured guidance to support treatment discussions. Two cross-cutting themes were identified: (1) perception that no treatment decision needed to be made regarding surgery and (2) reliance on diverse support resources. CONCLUSIONS: Parents feel discussions with surgeons promote informed involvement in their child's care, but they recognize that there may be few decisions to make regarding surgery. Even when parents perceive that there are there are no decisions to make, they prioritize asking questions to advocate for their children. The emotional burden of a cancer diagnosis often prevents parents from knowing what questions to ask. Merging this data with our prior pediatric surgeon interviews will facilitate development of a novel decision support tool that can empower parents to ask meaningful questions. LEVEL OF EVIDENCE: III.

A valued voice: A qualitative analysis of parental decision-making preferences in emergent paediatric surgery.

INTRODUCTION: Shared decision-making, with an emphasis on patient autonomy, is often advised in healthcare decision-making. However, this may be difficult to implement in emergent settings. We have previously demonstrated that when considering emergent operations for their children, parents prefer surgeon guidance as opposed to shared decision-making. Here, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision-making preferences. METHODS: Parents of paediatric patients who underwent surgery over the past 5 years at a University-based, tertiary children's hospital for cancer, an emergent operation while in the neonatal intensive care unit (NICU) or extracorporeal membrane oxygenation (ECMO) were invited to complete a 60-min semi-structured interview. Interviews were digitally recorded and transcribed verbatim. Thematic content analysis was performed via deductive and inductive analysis. An iterative approach to thematic sampling/data analysis was used. RESULTS: Thematic saturation was achieved after 12 interviews (4 cancer, 5 NICU and 3 ECMO). Five common themes were identified: (1) recommendations from surgeons are valuable; (2) 'lifesaving mode': parents felt there were no decisions to be made; (3) effective ways of obtaining information about treatment; (4) shared decision-making as a 'dialogue' or 'discussion' and (5) parents as a 'valued voice' to advocate for their children. CONCLUSIONS: When engaging in decision-making regarding emergent surgical procedures for their children, parents value a surgeon's recommendation. Parents felt that discussion or dialogue with surgeons defined shared decision-making, and they believed that the opportunity to ask questions gave them a 'valued voice', even when they felt there were no decisions to be made. PATIENT OR PUBLIC CONTRIBUTION: For this study, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision-making preferences. Parents thus provided all the data for the study.

"Reading the room:" A qualitative analysis of pediatric surgeons' approach to clinical counseling.

BACKGROUND: In our prior analysis of parental preferences for discussions with pediatric surgeons, we identified that parents prefer more guidance from surgeons when discussing cancer surgery, emergency surgery, or surgery for infants, and they prefer to engage surgeons by asking questions. In this study, we investigate surgeon preferences for decision making discussions in pediatric surgery. METHODS: We conducted a thematic content analysis of interviews of pediatric surgeons regarding their preferences for discussing surgery with parents. Board certified/board eligible pediatric surgeons who had been in practice for at least one year and spoke English were eligible. Fifteen surgeons were invited, and twelve 30-minute semi-structured interviews were completed (80%). Interviews were recorded and transcribed. Thematic content analysis was performed using deductive and inductive methods. RESULTS: Data saturation was achieved after 12 interviews [6 women (50%), median years in practice 6.25, 10 in academic practice (83%), 8 from Midwest (67%)]. 5 themes emerged: (1) Collaboration to promote parental engagement; (2) "Cancer is distinct but not unique;" (3) "Read the room:" tailoring discussions to specific parental needs; (4) Perceived role of the surgeon; (5) Limited experience with decision support tools in pediatric surgery. CONCLUSIONS: Pediatric surgeons prefer a collaborative approach to counseling that engages parents through education. They prioritize tailoring discussions to meet parental needs. Few have utilized decision support tools, however most expressed interest. Insight gained from our work will guide development of a decision support tool that empowers parental participation in counseling for pediatric surgery. LEVEL OF EVIDENCE: III.