Paediatric cancer survivors, their parent/caregiver and health care professionals will be invited to express their views and perspectives in an interview with the researcher

Not Application as this is a qualitative study

Joyce Chung

This study aims to fill the gaps in knowledge regarding the effects of cancer and its treatment on Hong Kong Chinese paediatric cancer survivors, especially during the transition period, to further capture a deeper understanding of the challenges, views and needs of Hong Kong Chinese paediatric cancer survivors and the key stakeholders around them via face-to-face conversations.

Objectives: Although increasing attention has been devoted to the development of paediatric cancer survivorship programmes, most of these studies have originated in Western countries. Given the cultural differences between Asian and Western communities, the applicability of the findings to paediatric cancer survivors in Asian cultural contexts is limited. To date, research remains scant regarding the needs and challenges of Hong Kong Chinese paediatric cancer survivors and the key stakeholders involved during the transition period after cancer treatment. Although Hong Kong paediatric cancer survivors do attend regular medical follow-up visits, most attention has been focused on their physiological care, while their psychosocial needs remain unmet. Accordingly, the aim of this proposed study will be to fill the gaps in knowledge regarding the effects of cancer and its treatment, especially will focus on psychosocial effects in Hong Kong Chinese paediatric cancer survivors during the transition period.

Design and subjects: A qualitative descriptive design will be used. A purposive sample of 15 paediatric cancer survivor participants and their parents or caregivers, five paediatric oncology nurses and three paediatric oncologists will be invited for a semi-structured interview conducted with the aid of an interview guide.

Data analysis: A thematic analysis approach will be used for data analysis.

Expected results: The findings of this study will provide an in-depth understanding of the needs, challenges and views of paediatric cancer survivors and other key stakeholders, which will greatly facilitate the future development of appropriate targeted paediatric cancer survivorship programmes.

Needs Assessment to Guide the Development of a Paediatric Survivorship Programme in Hong Kong

Needs Assessment to Guide the Development of a Paediatric Survivorship Programme in Hong Kong to Promote Physical and Psychological Well-being of Children After Cancer Treatment

Semi-structured and open-ended questions will be used to collect qualitative data from the participants

Health and Medical Research Fund

The Hong Kong Polytechnic University

Symptoms and General Pathology

All Conditions

Neoplasms

Rare Diseases

Death

Neuroblastoma

Neuroectodermal Tumors, Primitive, Peripheral

Neuroectodermal Tumors

Neuroectodermal Tumors, Primitive

Neoplasms, Neuroepithelial

Neoplasms, Germ Cell and Embryonal

Neoplasms by Histologic Type

Neoplasms, Glandular and Epithelial

Neoplasms, Nerve Tissue

Neuroepithelioma

Jennifer W Mack, MD MPH

Parental decision-making for children with advanced cancer is complex. Many parents have overly optimistic beliefs about prognosis and as a result choose aggressive measures even at the end of life, which are associated with greater suffering. Yet most parents wish to limit suffering, and in retrospect, many regret choices for cancer treatment for advanced cancer. These findings suggest that parents do not always have the information they need to make decisions that reflect their preferences.

The proposed study will evaluate parental decision-making in advanced cancer, addressing gaps in the literature in 3 important respects. 1) Previous work on decision-making for children with advanced cancer has typically looked at decisions at one point in time, often asking parents to reflect on decisions after the child's death, even though parents' understanding of prognosis and decisions about care evolve over time. We will evaluate parental decision-making for advanced cancer over time. 2) Existing work focuses on aggressive end-of-life care as the worst possible outcome. However, some parents wish to pursue aggressive measures even when they recognize that the child has little chance for cure. We will evaluate the extent to which parental decision-making is informed and consonant with preferences, regardless of whether decisions lead to aggressive or palliative care. 3) Previous studies have focused on groups of different childhood cancers, making it difficult to ascertain whether differences in decision-making reflect differences in diseases, options for care, or parent preferences. We will focus on a single disease, relapsed neuroblastoma, as a model for parental decision-making.

Parental decision-making for children with advanced cancer is complex. Many parents have overly optimistic beliefs about prognosis and as a result choose aggressive measures even at the end of life, which are associated with greater suffering. Yet most parents wish to limit suffering, and in retrospect, many regret choices for cancer treatment for advanced cancer. These findings suggest that parents do not always have the information they need to make decisions that reflect their preferences.

The proposed study will evaluate parental decision-making in advanced cancer, addressing gaps in the literature in 3 important respects. 1) Previous work on decision-making for children with advanced cancer has typically looked at decisions at one point in time, often asking parents to reflect on decisions after the child's death, even though parents' understanding of prognosis and decisions about care evolve over time. We will evaluate parental decision-making for advanced cancer over time. 2) Existing work focuses on aggressive end-of-life care as the worst possible outcome. However, some parents wish to pursue aggressive measures even when they recognize that the child has little chance for cure. We will evaluate the extent to which parental decision-making for advanced cancer is informed and consonant with preferences, regardless of whether decisions lead to aggressive or palliative care. 3) Previous studies have focused on groups of different childhood cancers, making it difficult to ascertain whether differences in decision-making reflect differences in diseases, options for care, or parent preferences. We will focus on a single disease, relapsed neuroblastoma, as a model for parental decision-making. Children with relapsed neuroblastoma have advanced cancer but many options for care, including established cancer regimens, clinical trials, and palliation. Relapsed neuroblastoma presents an ideal model for parental decision-making in the setting of a complex array of choices. We will follow 120 parents at 8 institutions over time, beginning at relapse and continuing over 18 months. Parent interviews every 3 months and reviews of medical records throughout that time will be used to evaluate the ways that parental preferences for the aggressiveness of treatment change over time (Aim 1). Parental perception that care has been burdensome will be evaluated as possible driver of change in decision-making (Aim 2). Ideally, parent values for care would be the primary driver of treatment goals. Thus we will evaluate the extent to which parental understanding of prognosis, treatment options, and expected benefits and burdens of treatment can allow decision-making consonant with parental preferences in the absence of prior negative experiences with care (Aim 3). Finally, in-depth parent interviews will allow us to evaluate personal factors that drive parental decision-making (Aim 4). Throughout the study, a Parent Advisory Group will guide assessment of care preferences and decision-making.

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Needs Assessment to Guide the Development of a Paediatric Survivorship Programme in Hong Kong	NCT05355779	Pediatric Cance... Survivorship	Not Application...	9 Years - 18 Years	The Hong Kong Polytechnic University
Parental Decision-Making for Children With Relapsed Neuroblastoma	NCT02282735	Relapsed Neurob...		18 Years -	Dana-Farber Cancer Institute
Parental Decision-Making for Children With Relapsed Neuroblastoma	NCT02282735	Relapsed Neurob...		18 Years -	Dana-Farber Cancer Institute
Needs Assessment to Guide the Development of a Paediatric Survivorship Programme in Hong Kong	NCT05355779	Pediatric Cance... Survivorship	Not Application...	9 Years - 18 Years	The Hong Kong Polytechnic University

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Spots Global Cancer Trial Database for preferences

Every month we try and update this database with for preferences cancer trials from around the world to help patients and their families find trials that might be right for them. We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Every month we try and update this database with for preferences cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.