How do you tell parents whose child has cancer that the treatment has failed: A qualitative study on pediatric oncologists' practices.

Announcing drug resistance is complex for pediatric oncologists because they have to provide a substantial amount of medical information while taking a major emotional impact on the parents into account. This study aimed to understand how these announcements are currently conducted and how pediatric oncologists adapt the information given to each family in situations where there is resistance to treatment. Semi-structured interviews were conducted with 15 pediatric oncologists (66.7% women, aged 44.7 years on average). Interviews were audio-recorded and a thematic content analysis was conducted. Announcements of drug resistance are stressful, as they are not well codified, difficult to anticipate, and pediatric oncologists have many issues about how best to behave and which words to choose. The majority of them believe that the severity, or even the incurability of the disease, and the offer of a therapeutic alternative are essential components of the information to pass on. Pediatric oncologists describe how they adapt their communication to each family, particularly in relation to parents' questions, and also to their reactions during the announcement. They also need to adapt to the prior acquaintance they may have with the families, and to previous exchanges. Finally, pediatric oncologists acknowledge their subjectivity when estimating the parents need in terms of information. Understanding the course of these announcements gives us another point of view at the issues involved in this announcement. Proposals to support pediatric oncologists in this difficult moment can be suggested: communication support tool, work in pairs and discussion group.

The announcement of treatment resistance from the pediatric oncologist's point of view: a qualitative study.

Breaking bad news in pediatric oncology covers widely diverse clinical situations. The aim of this study was to highlight the specificities of the announcement of treatment resistance as perceived by pediatric oncologists, particularly in comparison with the disclosure of a cancer diagnosis. Semi-structured interviews were conducted in two pediatric oncology departments in France, with 15 pediatric oncologists (66.7% were women, aged 44.7 years on average). Interviews were audio-recorded and transcribed and a thematic content analysis was conducted. Most pediatric oncologists reported emotional difficulties in announcing treatment resistance. Some of them mentioned a personal need to accept resistance to treatment and to mourn the child's chances of recovery, and reported feelings of medical failure. This disclosure was considered more difficult than the announcement of the cancer diagnosis because it was associated with less optimism and more complex and fewer therapeutic options. The attachment bond created with families in the course of treatment seemed to exacerbate the emotional difficulties associated with this announcement. In conclusion, resistance to treatment has an impact on prognosis. It makes it more uncertain. Its announcement for pediatric oncologists is a turning point that affects their initial optimistic perspective. Their emotional difficulties are accentuated by the attachment that has been created with the families. Focusing on difficulties experienced by pediatricians could help to improve parent-pediatrician communication.

Les spécificités de la transition en cancérologie pédiatrique.

PARTICULAR FEATURES OF THE TRANSITION IN PAEDIATRIC ONCOLOGY: The transition from paediatrics to adult medicine for young people who have been treated for paediatric cancer presents specific issues. This is due to the previous experience of cancer, the risk of sequelae which is still present despite recovery and, finally, the specific links established between families and paediatricians. These paediatricians must, therefore, look forwards and prepare the transition throughout their supervision, in order to allow separation while avoiding a break in follow-up.

Neonatal cancer.

Neonatal cancer is rare and comprises a heterogeneous group of neoplasms with substantial histological diversity. Almost all types of paediatric cancer can occur in fetuses and neonates; however, the presentation and behaviour of neonatal tumours often differs from that in older children, leading to differences in diagnosis and management. The causes of neonatal cancer are unclear, but genetic factors probably have a key role. Other congenital abnormalities are frequently present. Teratoma and neuroblastoma are the most common histological types of neonatal cancer, with soft-tissue sarcoma, leukaemia, renal tumours, and brain tumours also among the more frequent types. Prenatal detection, most often on routine ultrasound or in the context of a known predisposition syndrome, is becoming more common. Treatment options pose challenges because of the particular vulnerability of the population. Neonatal cancer raises diagnostic, therapeutic, and ethical issues, and management requires a multidisciplinary approach.

[The announcement of treatment resistance in pediatric oncology: Understanding parents' experiences and influencing factors with a mixed methodology]. / L'annonce de résistance au traitement en oncologie pédiatrique : une étude avec une méthodologie mixte pour comprendre l'expérience des parents et les facteurs qui l'influencent.

OBJECTIVE: The announcement of a resistance to treatment in pediatric oncology occurs within the framework of an established parent-pediatrician relationship. The aim of this study was to understand the parents' experience of this announcement and the relational and communicational factors likely to impact it. METHOD: A mixed-methods study was conducted in a pediatric oncology department with 15 parents of a child with treatment-resistant cancer, with an average age of 40.8years. The parents completed three questionnaires to assess their anxiety and depression (HADS) and their information needs (EORTC - QLQ Info 25 and PTPQ). Semi-structured interviews were conducted and a content analysis was performed. RESULTS: The majority of parents have "suspected" or "proven" anxiety and/or depressive disorders. The experience of this announcement was influenced by the quality of the parent-pediatrician relationship, the perceived quality of the management, the anticipation of the announcement, the context of the announcement, and the experience of previous announcements. The parents interviewed were very satisfied with the informational exchanges. This satisfaction was underpinned by honest communication and by the responsiveness and availability of the pediatricians. DISCUSSION: The establishment of a relationship of trust between the family and the pediatrician throughout the course of care plays a major role in the parents' experience of the announcement of resistance to treatment.

[Announcing treatment resistance in pediatric oncology: A qualitative study of nurses' experiences]. / L'annonce de résistance au traitement en oncologie pédiatrique : une étude qualitative sur l'expérience du personnel infirmier.

INTRODUCTION: The announcement of treatment resistance is a key moment in the management of children treated for cancer. Although nurses are present at various stages of this announcement, few studies have examined their role and experience. This study proposes to enhance understanding of the experience of nurses at this time of the pediatric cancer trajectory in France. METHOD: A qualitative study was conducted in two pediatric oncology departments. Semi-structured research interviews were conducted with seven pediatric nurses (five women) with an average age of 36.9 years. RESULTS: Nurses report not being systematically present during announcements of treatment resistance but being present with the families before and after these announcements. Nurses described their role at this point in the management process as multifaceted. The emotional burden associated with these announcements is significant: nurses must manage their own emotions when faced with the discovery of resistance to treatment, those of the families, and must often answer difficult questions about the prognosis or end of life. In this context, teamwork is an important support. DISCUSSION: Better awareness and recognition of the role of nurses and the associated emotional burden would enable them to fully carry out their missions.

Helping Patients Communicate With Oncologists When Cancer Treatment Resistance Occurs to Develop, Test, and Implement a Patient Communication Aid: Sequential Collaborative Mixed Methods Study.

BACKGROUND: Most cancer-related deaths result from disseminated diseases that develop resistance to anticancer treatments. Inappropriate communication in this challenging situation may result in unmet patient information and support needs. Patient communication aids such as question prompt lists (QPLs) may help. OBJECTIVE: This study aims to develop and pilot-test a specific QPL in the following two contrasting clinical contexts in France after cancer resistance has developed: triple-negative and luminal B metastatic breast cancer (MBC) and metastatic uveal melanoma (MUM). METHODS: A sequential study design with a mixed methods collaborative approach will be applied. The first step aims to build a specific QPL. Step 1a will explore oncologist-patient communication issues from oncology professionals' interviews (n=20 approximately). Step 1b will appraise information and support needs experienced by patients with MBC or MUM both quantitatively (n=80) and qualitatively (n=40 approximately). These data will be used to develop and pilot-test a QPL specific to patients with cancer experiencing initial or acquired resistance to treatment. We expect to obtain a core QPL that comprises questions and concerns commonly expressed by patients with resistant cancer and is complemented by specific issues for either MBC or MUM cancer sites. In step 1c, 2 focus groups of patients with any type of metastatic cancer (n=4) and health care professionals (n=4) will be conducted to revise the content of a preliminary QPL and elaborate an acceptable and feasible clinical implementation. In step 1d, the content of the QPL version 1 and implementation guidance will be validated using a Delphi process. Step 2 will pilot-test the QPL version 1 in real practice with patients with MBC or MUM (n=80). Clinical utility will be assessed by comparing responses to questionnaires administered in step 1b (QPL-naive historical control group) and step 2 (QPL intervention group). RESULTS: This study received grants in March and December 2019 and was approved by the French national ethics committee in July 2019. As of October 2021, interviews with oncology professionals have been conducted and analyzed (N=26 to reach saturation), and 39 and 27 patients with MBC and MUM, respectively, have been recruited. CONCLUSIONS: A clinically and culturally tailored QPL is expected to facilitate patients' participation in consultations, improve oncologists' responses to patients' information and support needs, and thus foster patients' psychological adjustment to the diagnosis and follow-up of cancer resistance to treatment. TRIAL REGISTRATION: ClinicalTrials.gov NCT04118062; http://clinicaltrials.gov/ct2/show/NCT04118062. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/26414.

[Emotions Associated with Breaking Bad News in Pediatric Oncology and Parents-Pediatrician Communication: A Status Report]. / Enjeux émotionnels de la communication parents-pédiatre lors de l'annonce de mauvaises nouvelles en oncologie pédiatrique : un état de la question.

This literature review aims to explain how the emotions aroused by the announcement of bad news in pediatric oncology affect communication between parents and pediatric oncologists. In the first part, we summarize the parents' expectations regarding communication with the pediatrician at this critical time in their child's care. Then, in a second part, we specify the influence that the emotions of pediatric oncologists and parents during these announcements can have on parent-pediatrician communication. In this context, the emotions and defense mechanisms of pediatric oncologists, parental distress as expressed by parents and as perceived or feared by pediatricians, are discussed. For this synthesis, we have endeavoured to select studies including both mothers and fathers. On the basis of the observations carried out in this review, we conclude by suggesting avenues for the practical implications and for future research. The continuation of research including both parents appears necessary to allow for a closer adaptation of the reactions and needs of each parent, particularly at key moments in the child's care, such as the announcement of bad news. Encouraging exchanges on the emotions felt within the medical and care team, particularly with the department psychologist, could be an opportunity for pediatricians to question their experience of the announcement of bad news and could promote the circulation of emotions in the parent-pediatrician relationship and communication.

[Announcement of a serious illness to a child]. / Annonce d'une maladie grave à un enfant.

Announcement of a serious illness to a child. Critically ill children should be directly informed about their illness, in a way that is appropriate to their age, family context and alliance with themselves and their parents. The process of the announcement of the diagnosis does not correspond to an isolated moment but must be conceived in successive stages, respecting a different rhythm of progression in the child and in each of his parents, even if sometimes the clinical circumstances require the initiation of treatment fairly quickly. The synthetic principle of informing "without violence or betrayal" guides the conditions for the announcement of the diagnosis of pediatric serious illness, both to parents and to the sick child.

Annonce d'une maladie grave à un enfant. Les enfants gravement malades doivent être directement informés au sujet de leur maladie, de manière adaptée à leur âge, au contexte familial et dans l'alliance avec eux-mêmes et leurs parents. Le processus de l'annonce du diagnostic ne correspond pas à un moment isolé mais doit être conçu par étapes successives, en respectant un rythme différent de cheminement chez l'enfant et chez chacun de ses parents, même si parfois les circonstances cliniques imposent la mise en route du traitement assez rapidement. Le principe synthétique d'informer « sans violence ni trahison ¼ guide les conditions de l'annonce du diagnostic de maladie grave en pédiatrie, tant aux parents qu'à l'enfant malade.

Coping Strategies and Factors Related to Problematic Substance Use and Behavioral Addictions Among Adolescents and Young Adults with Cancer.

Purpose: This study aimed to explore and identify the factors associated with problematic substance use (alcohol, tobacco, and cannabis) and behavioral addictions (internet and eating disorders) over time in adolescents and young adults (AYAs) treated for cancer. Methods: AYAs newly diagnosed with cancer, 15-25 years of age, completed a questionnaire during their hospitalization (T1), assessing their consumption of alcohol, tobacco, and cannabis (The Alcohol Use Disorders Identification Test; The Smoking Behavior Questionnaire; and The Cannabis Abuse Screening Test), their internet use (The Internet Addiction Test), their body preoccupations (The Eating Attitudes Test), as well as their coping strategies (Brief COPE) and emotional adjustment (The Hospital Anxiety and Depression Scale). Questionnaires were completed again 6 months later (T2). Results: Seventy-three AYAs were included at T1 and 21 AYAs at T2. Nearly one out of two (46.58%) AYAs had a problematic substance use or behavioral addiction after cancer diagnosis (T1). Problematic use of internet was frequently reported (23.29%), as well as harmful alcohol consumption or addiction (16.44%) and cannabis dependence (12.33%). The main factor related to problematic substance use was being older, while the main factor related to behavioral addiction was having a higher anxiety score. Substance use as a coping strategy was used more frequently by AYAs with problematic substance use and emotional support as a coping strategy was used more frequently by AYAs with a behavioral addiction. Conclusions: High rates of problematic substance use and behavioral addiction were reported in our sample. AYAs surveyed had high problematic use of cannabis and high internet use. Attention to substance use and addictive behaviors is recommended to ensure optimal care.