This site is intended for UK healthcare professionals
Medscape UK Univadis Logo
Medscape UK Univadis Logo

Welcome to the new home for Guidelines

Summary for secondary care

CureAll Framework: WHO Global Initiative for Childhood Cancer: Increasing Access, Advancing Quality, Saving Lives

Overview

Caring for children with cancer carries unique specificities along the cancer continuum that must be included in packages of essential interventions to meet children’s needs. The CureAll approach aims to increase the capacity of countries to provide quality services for children with cancer, and to support the prioritisation of childhood cancer at the global and national levels. Please refer to the full guideline for the complete set of recommendations, including background information and approach to implementation.

This specialist Guidelines summary covers the World Health Organization (WHO)'s childhood cancer care pathway interventions, including early detection, treatment considerations, psychosocial support, survivorship care, and fertility preservation, ensuring holistic and improved patient outcomes.

This summary is intended for use by oncologists working in a secondary care setting.

Childhood Cancer Care Pathway 

photo of
©WHO 2020: WHO framework for strengthening and scaling-up services for the management of invasive cervical cancer, Geneva. 

Interventions

Early Detection

  • Provide careful attention to signs and symptoms in young children who cannot always describe symptoms; parents as well as primary care providers must be aware of the specific signs in order to achieve early diagnoses including timely diagnosis and staging.

Diagnosis

  • Healthcare professionals and services that are required include: 
    • specialised physicians with paediatric oncology training, imaging services, surgeons and pathology
    • consideration for general anaesthesia to perform diagnostic imaging (for example, computed tomography, magnetic resonance imaging, nuclear medicine)
    • invasive diagnostic procedures, such as for obtaining diagnostic tissue (for example, lumbar puncture, bone marrow aspirate and biopsies, interventional radiological biopsies).

Treatment Considerations

  • Child-centred care: coordinated family centred-care with socioeconomic assistance that may include lodging house, transportation, and food subsidies
  • Systemic therapy with adequate supportive care and symptom management, including anti-emetic support during chemotherapy, which may include addressing anticipatory nausea, particularly in older children and adolescents
  • Surgery and anaesthesia: robust technical expertise according to disease indication and avoiding long-term morbidity when possible, such as avoidance of amputation. Trained providers in paediatric anaesthesia are also required
  • Radiotherapy: prescribed and delivered to reduce long-term toxicities. Radiotherapy often requires general anaesthesia for children unable to remain still
  • Medical supportive care: therapies can cause toxicities requiring immediate interventions to optimise outcomes and reduce treatment abandonment. These interventions include ensuring adequate nutrition; infection prevention and control; symptom management such as pain and nausea; timely access to a blood bank; avoidance of organ injury, and rehabilitation services (physical, cognitive, and psychological). Fertility preservation must also be discussed with the child and family
  • Social and educational development: supporting school and having access to play and developmental activities throughout periods of hospitalisation is particularly important and can be provided with in-hospital schooling programmes, dedicated play areas, play therapists, and music/art therapies, among others
  • Adolescent and young adult (AYA) care: consideration should be given to the specific characteristics and needs of this population
  • Psychosocial care (short and long term): families need a psychosocial and economic evaluation and access to a psychosocial team to provide support, aiming to prevent refusal or abandonment of therapy. Psychosocial care should be adapted by age group, with particular attention to the AYA group, and be delivered by multidisciplinary psychosocial professionals.

Palliative Care and Pain Relief

  • Palliative care should be offered early in the child’s journey to provide relief of pain and all other types of suffering (physical and emotional) and also to support families. Distinct competencies are required for childhood-specific providers and services
  • Appropriate pain relief following procedures should be administered—this may include offering relief for procedural anxiety. Support can be provided with play or music therapy using distraction techniques, role play, and pharmacological support when appropriate.

Survivorship

  • Children’s lifespan after a cure from cancer is expected to be long and, as such, the potential for long-term toxicities must be considered and discussed with families throughout all decision-making processes around cancer treatment, including risk of second malignancies, cardiovascular health, mental health, and fertility preservation
  • When implementing childhood cancer services, essential services must be defined according to the type of cancer, the stage at diagnosis or risk group, and health system context across the cancer continuum. Such comprehensive services include psychosocial and nutritional support, infection prevention and control, blood banking services, resources to prevent and address oncological emergencies, and financial support for the family. Considerations of sociodemographic and cultural factors are required to deliver comprehensive cancer care to children.

Family-Centred Multidisciplinary Care

Nursing

  • Nursing personnel should possess specialised competencies of paediatric oncology care to deliver the complex needs of children with cancer. Such trained staff should be optimised to deliver to the fullest extent of their training and accreditation, working on childhood cancer wards and avoiding unnecessary rotation, when possible, to ensure continuity of care and in-service training. Inadequate nursing staff or failure to possess the necessary competencies can limit quality of care even if other health professionals are present.

Psychosocial Support

  • Addressing the emotional and behavioural needs of children, adolescents, and their families throughout the course of disease (diagnosis, treatment, re-entry to school and community, end-of-life care, and survivorship) to enhance coping and reduce suffering constitutes an essential component of the multidisciplinary approach. With parents’ permission, it is important to include children in conversations and decisions about their treatment when it is age-appropriate, and that toolkits are available to facilitate the dialogue. Adolescents, in turn, should always be given an opportunity to discuss health matters with their providers privately, without the presence of family members, and should be offered private spaces within the hospital where possible for peer and social interaction, and for age-appropriate activities (for example, music, games). Their voices and opinions should be a central part of the decision-making process
  • Strong psychosocial care has been shown to prevent abandonment of treatment, reduce misperceptions or fears about treatment, and ultimately contribute to improved outcomes. Supplementing psychosocial care with the provision of transportation and housing support enables families to attend appointments and adhere to prescribed treatment
  • The AYA population has psychosocial needs during a period of growing independence from their parents, where they experience body changes and the development of self-image and sexuality. They start ‘discovering’ the world, which can lead to behaviours such as alcohol and drug consumption, smoking, and unsafe sexual behaviours that need to be addressed in an open and honest manner. It is also a period filled with opportunity to pursue projects (for example, final school years, first jobs, thoughts about future career, first relationships). Particular attention should be paid to social wellbeing and to connectiveness with peers. As such, AYA psychosocial needs should be evaluated and care should be adapted and, when possible, delivered by providers possessing specific competencies in the care of AYA.

Education/Schooling

  • Allowing children to pursue their schooling is important to maintain educational progress through cancer treatment, which often extends for months or years. In addition, schooling supports emotional and social development for children. Attending the classroom allows children to socialise with their peers, which helps them cope with treatment. This can be managed by employing teachers in-hospital to deliver group learning sessions and assist with tasks, liaising with patients’ schools to increase the amount of support given, and expanding online access to classroom lessons, including contact with peers. Attendance in school should be encouraged by medical professionals during periods of treatment where it is medically safe. For adolescents, this is particularly relevant as young people approach the end of their schooling and may face the challenges in completing important examinations and delays in preparing for higher studies or entering the professional workforce.

Nutrition

  • Globally, poor nutritional status in children with cancer (undernutrition or obesity) increases the risks of infection and treatment-related toxicities and is associated with increased rates of abandonment. Assessment of the nutritional status at diagnosis should be conducted by a trained nutritionist or nurse, and consider the recovery and age of the child. Moreover, reversal of these adversities can be achieved with the use of locally made, ready-to-use therapeutic foods as well as proactive nutrition interventions. These are readily available, effective, and inexpensive
  • The prospective recording of patients’ nutritional status is essential to prevent and address the undernourishment secondary to receiving chemotherapy, which is related to mucositis, nausea, and change of taste, among other factors. Established guidance documents with algorithms for nutrition management are available
  • Nutrition education, an inexpensive approach to medical nutrition therapy, is also an important feature of nutritional programmes aimed at resolving malnutrition, particularly the double burden of malnutrition (overnutrition and undernutrition) that is an emerging chronic disease in most lower-middle-income countries (LMIC).

Infection Prevention and Control

  • Poor infection prevention and control, especially in the setting of malnutrition, can contribute to higher rates of infection-related mortality, leading to inferior survival rates for children with cancer in LMIC. Successful models of collaboration to improve infection control by implementing low-cost interventions and standard tools (for example, the WHO Hand Hygiene Self-Assessment Framework) contribute significantly to reducing the incidence of infection-related mortality in paediatric oncology centres. Currently, emerging infections and increased resistance to antimicrobials threaten us all, but particularly children. Thus, infection control and responsible use of antimicrobials should be implemented through infection stewardship.

Adolescent and Young Adult Care

  • AYA is a distinct, vulnerable group with unique needs that are often underrecognised and overlooked by healthcare providers. Unmistakably, the epidemiology of cancer is different in this age group. In addition, histological types, tumour genomics, biology, and clinical behaviour of common childhood malignancies may differ in adolescents compared with children. This is also reflected in different outcomes and survival in adolescents and children: survival rates in adolescents have not seen the same rate of improvement as in children. In some tumour types such as acute lymphoblastic leukaemia, survival for AYA is poorer than in younger children due to different, more aggressive tumour biology, but also related to treatment choices. Models of care for AYA patients depend on country context, although select evidence has shown AYA patients with acute lymphoblastic leukaemia benefit from the choice of paediatric treatment protocols and, in some settings, they may also benefit from care in paediatric centres
  • For cancer therapies, the physiological changes during the adolescent years affected by hormonal and other drivers may impact on drug toxicity. However, as growing independent adults, the sense of invulnerability may cause them not to comply with therapy and they are thus at higher risk of relapsing
  • Young people’s opinions must be encouraged and integrated into the decision-making process. Ideally, facilities have age-appropriate areas of care for AYA, allowing for privacy, social interaction, and age-appropriate learning and developmental activities. AYA-specific cancer research is required to better understand the diseases in this age groups, and participation in AYA clinical trials must be encouraged, when available, to improve knowledge and outcomes. Transition to adult medical teams must be done respectfully and with attention to an adolescent's needs.

Palliative Care

Palliative care begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease. It is a combination of measures, notably related to symptom management, which contribute to maximising health-related quality of life
  • Health providers must evaluate and alleviate a child’s physical, psychological, and social distress
  • Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited
  • Palliative care can be provided in tertiary care facilities, community health centres and children’s homes
  • Bereavement support for parents whose children die from cancer is also an indispensable element of family-centred care, assisting the family (including survivor siblings) as they recover from the loss of a child.

Survivorship Care

  • As a result of the considerable improvements in prognosis and reduction in mortality from childhood cancer, strategies are needed to reduce long-term toxicities and disabilities, such as cardiovascular disease and other chronic health conditions, secondary malignant neoplasms, and psychosocial and neurocognitive long-term effects. There is increasing focus on the need to evolve strategies for prevention, early identification, and treatment of the morbidities in survivors that are related to earlier treatment
  • Late effects from initial cancer treatment that are most common after intensive cancer therapies include haematopoietic stem cell transplant, radiation therapy, and intensive chemotherapy regimens, for example, acute myeloid leukaemia
  • It must be recognised that long-term follow-up of childhood cancer survivors is crucial to promote healthy lifestyles and to prevent or detect early diseases related to initial cancer treatment or cancer predisposing genetic conditions. Childhood cancer survivors who are engaged in survivorship care can achieve better health and educational outcomes than survivors who do not receive care during this time
  • Additionally, survivors should be educated about how to manage their risk of developing specific health conditions as they mature and can benefit from information on how to maintain a healthy lifestyle after cancer treatment.

Fertility Preservation

  • Although the majority of childhood cancer survivors are able to have children of their own, long-term fertility risks secondary to cancer treatment exist and must be addressed, particularly in the AYA population for whom concern around fertility is more relevant. These risks can include inability to achieve or carry a pregnancy to term, but also increased maternal morbidity and preterm birth. The fertility risks are also an additional cause of distress for patients going through treatment or experienced after treatment, and have led to increasing interest in the field of fertility preservation. Conversations between providers and young people or children’s parents should be started early during treatment. Sperm and oocyte collection are considered standard strategies.

References


UP NEXT