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

Neoplasms

Heart and Blood Diseases

Blood and Lymph Conditions

Immune System Diseases

All Conditions

Rare Diseases

Multiple Myeloma

Neoplasms, Plasma Cell

Neoplasms by Histologic Type

Hemostatic Disorders

Blood Coagulation Disorders

Vascular Diseases

Paraproteinemias

Blood Protein Disorders

Hematologic Diseases

Hemorrhagic Disorders

Lymphoproliferative Disorders

Immunoproliferative Disorders

Participants will be asked to take part in a 30-60 minute interview to understand their treatment preferences. Members of the research team will conduct this either in the clinic or over the phone, as per patient preference.

Participants will be asked to take part in a 30-60 minute interview to understand their treatment experiences and preferences.

Patient Interview

Sally Taylor, PhD

Melissa B Stanworth, MPH

This is a qualitative (interview) study to explore the experiences of people receiving treatment for MM and to understand what matters most to them when making treatment decisions.

People can receive many lines of treatment for multiple myeloma. We would like to understand more about the experiences of people being treated for multiple myeloma including what matters most to them when considering treatment options, how their experiences have differed with different treatments and if they have any treatment preferences. Patients at The Christie who have received five or more lines of treatment for Multiple Myeloma will be eligible to take part in this study. They will be asked to participate in an interview which should take approximately 30 minutes to an hour. During the interview they will be asked questions regarding their experiences and preference for treatment. Interviews will be conducted either in person or over the phone depending on patient preference. The interviews will be recorded by the research team using a Dictaphone and transcribed by an external transcription service called 1st Class Secretarial. The transcripts of all participant interviews will be reviewed by members of the research team and experiences will be identified and described.

PatIent exPeRiences and prEFerence of trEatment foR Multiple Myeloma

The interview will explore the experiences of people receiving treatment for multiple myeloma and understand what matters most to them when making treatment decisions.

The interview will explore how experiences have differed across different lines of treatment and determine if people with multiple myeloma have any preferences for particular treatments.

CellCentric Ltd.

The Christie NHS Foundation Trust

Behaviors and Mental Disorders

Quality of Life

Patients receive the first administration of chemotherapy through day hospitalization in the hematology department, then 3 weekly administrations of chemotherapy at home.

Patients receive 4 weekly administrations of chemotherapy through day hospitalization in the hematology department.

Association of day hospitalization with hospital-at-home

Day hospitalization exclusively

Bénédicte MITTAINE-MARZAC, PharmD

Matthieu de STAMPA, MD

The study aims to compare the overall survival adjusted to quality of life of 2 groups of patients with multiple myeloma, depending on the type of care: (1) day hospitalization exclusively or (2) day hospitalization combined with hospital-at-home.

As secondary objectives, the study aims to compare the impacts of the two types of care organization on:

* the survival of patients and response to treatments according to criteria of the International Myeloma Working Group,
* psychological status of patients,
* specific toxicity related to treatment used (haematological and infectious toxicity, neurotoxicity, ...),
* health outcomes,
* the caregiver's burden,

This study is combined with a qualitative study about the incentives and the barriers, and in order to set up the patient's typology.

Multiple myeloma, a malignant blood disease with about 5000 new cases diagnosed annually in France, essentially in the elderly population, is associated with alteration of quality of life resulting from pathology and therapies.

Multiples cycles of chemotherapies are administered in a regular manner, as outpatient treatment or day hospitalization.

In this study aiming to explore the impacts on health outcomes and resources utilization of hospital-at-home for elderly patients with multiple myeloma, all patients will be treated by 4 standardized protocols of treatment including bortezomib by subcutaneous administration.

9 centers will participate to the study. The study will not change the usual practices of care of these centers:

* 6 centers organize patient care through day hospitalization combined with hospital-at-home,
* 3 other centers rely exclusively on day hospitalization.

The study will target overall the inclusion of 300 patients for the 9 centers and 70 participants (35 for each arm: 10 patients, 10 caregivers, 15 from healthcare team) for the qualitative study.

The individual follow up of each patient will last 12 months. The patient's vital status will be documented at the 24th month.

Impacts on Health Outcomes and Resources Utilization of Hospital-at-home for Elderly Patients With Multiple Myeloma

Comparison of quality of life using questionnaires EORTC QLQ-30.

Comparison of quality of life using questionnaires EORTC QLQ-MY20.

All patients will be evaluated in order to collect the following data:

* death and causality with multiple myeloma, treatments;
* progression or relapse according to criteria of International Myeloma Working Group;
* survival without progression, full or partial remission.

RAI-HC (Resident Assessment Instrument Home Care) will be used at home. Multidimensional evaluation involves 19 areas such as sociodemographic, environmental and clinical endpoints with psychological status, cognitive status, morbidity and medication compliance defined by validated synthetic clinical scales.

This evaluation will be performed for all patients with the National Cancer Institute Common Terminology Criteria for Adverse Events (CRCAE version 3.0).

Family quality of life will be evaluated with Zarit Burden Inventory

The following costs will be collected: hospitalization, home care, transport, biological exams, costs of chemotherapy (bortezomib) as well as indirect costs such as paid sick leave and salary of caregiver at home.

The assessment criteria are the quality care, the continuity of care, the coordination between the care actors, the information transmission, the incentives and the barriers according to the forms of hospitalization.

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
PatIent exPeRiences and prEFerence of trEatment foR Multiple Myeloma	NCT06322927	Multiple Myelom...	Patient Intervi...	18 Years -	The Christie NHS Foundation Trust
Impacts on Health Outcomes and Resources Utilization of Hospital-at-home for Elderly Patients With Multiple Myeloma	NCT03490084	Multiple Myelom...	Association of ... Day hospitaliza...	65 Years -	Assistance Publique - Hôpitaux de Paris
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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