Recommendations for medical care in the pediatric oncology camp setting: Consensus statements based on Delphi methodology

For many children with cancer, participation in oncology camp programs is an important component of healing that offers opportunities for fun and can have substantial impacts on social and physical well‐being. Optimal medical care and infectious screening for children attending oncology camp is critical to maximize safety and opportunities for participation. This paper describes recommendations for a series of common medical issues unique to the care of children with cancer in the camp setting generated by a modified Delphi consensus approach.     

Guidelines for pediatric cancer centers

Since the American Academy of Pediatrics published guidelines for pediatric cancer centers in 1986 and 1997, significant changes in the delivery of health care have prompted a review of the role of tertiary medical centers in the care of pediatric patients. The potential effect of these changes on the treatment and survival rates of children with cancer led to this revision. The intent of this statement is to delineate personnel and facilities that are essential to provide state-of-the-art care for children and adolescents with cancer. This statement emphasizes the importance of board-certified pediatric hematologists/oncologists, pediatric subspecialty consultants, and appropriately qualified pediatric medical subspecialists and pediatric surgical specialists overseeing the care of all pediatric and adolescent cancer patients and the need for facilities available only at a tertiary center as essential for the initial management and much of the follow-up for pediatric and adolescent cancer patients.     

Current status of palliative care in Israel: a pediatric oncologist's perspective

Pediatric cancer palliative care is characterized by diversity of care delivery models; effect of cancer on the family as the central focus of care and consideration of culture, spirituality, communication, and ethical standards. In Israel, children who are in palliative care are treated by the staff of the centers and about 70 to 80 % of the children are dying in the pediatric Hematology Oncology departments and units. Special efforts are also made in the pediatric departments in order to better treat adolescents in terminal phases. Palliative care education program in Israel was started several years ago together with adult palliative care specialists, the Israeli pediatric oncologists still witness many barriers for treatment amongst parents as well as in medical pediatric teams especially in pain management. During the last years, the Israeli pediatric palliative care teams improved the management of all symptoms in a dying child with special attention to existential, emotional and social demands of the child and the whole family. Education of the medical and nursing team is imperative, training in pharmacology and metabolism of antalgic drugs is also mandatory in order to better manage symptom control of the children at the end of life.     

Quality of care at the end of life in children with cancer

Aim:   Current Australian guidelines for the provision of paediatric palliative care highlight the importance of services being focused on the needs of the child and family. We aimed to establish parents' level of satisfaction with the quality of care currently being provided to children dying of cancer.
Methods:   We interviewed 96 parents of children who died of cancer in Melbourne, Australia between 1996 and 2004 to ascertain how they rated the care provided to their child during the end-of-life period.
Results:   A majority of parents were satisfied with the care provided by their primary oncologist, local doctors, palliative care services and home-care nurses. Most parents felt that discussions about key medical and treatment decisions were appropriate and clearly understood. Parents were generally satisfied with the leadership roles undertaken in decision-making in the end-of-life period; however, parents who were not satisfied indicated that they would like additional involvement of their primary oncologist.
Conclusions:   Current approaches to end-of-life care in children with cancer appear to be satisfactory. The main focus should continue to be on open and honest communication.     

Exploration of a self-protective strategy in pediatric oncology staff

Oncology care is considered a stressful occupation. Little is known about the coping strategies oncology staff members use to deal with the stress of their work. The purpose of this study was to determine whether a self-protective strategy found in parents of children with cancer is also present in pediatric oncology staff. To explore this assumption, staff members' ratings were compared with the parents' ratings on the need for support and with the children's ratings on experienced pain. We also explored the characteristics which staff members attribute to the children and the parents. A total of 76 staff members, 84 children with cancer, and their 163 parents participated in the study. Both gender and number of years working in oncology care were positively associated with increased self-protective reactions in staff members. Male staff members rated medical procedures and the pain children experience in general as less painful than did female staff members. Their judgements about experienced pain in general and the lumbar puncture procedure in particular tended to be lower than the children's ratings. Female staff members attributed more positive characteristics to children with cancer and their parents than did male staff members. Staff members with more years of experience in oncology tended to rate all three medical procedures as less painful than those with less years of experience, and they also attributed more positive characteristics to the children. Staff members should be observant to their perceptions of children and parents, especially if their experience increases. © 1996 Wiley-Liss, Inc.     

A profile of heart disease in children in a developing country

Experience is presented of paediatric cardiology in a well-equipped and staffed centre during a six-year period in a developing country. Despite the success of the programme in offering first class medical investigation and surgical care to a large number of children, it is estimated that only about 2% of the existing cases in the country were operated upon. The main problems were the large numbers of cases, creating long waiting lists, and the lack of adequately trained paramedical personnel. Although paediatric cardiology in other developing countries is by no means a first priority, thousands of children suffering from heart disease should not be ignored. It appears that establishing similar centres for the care of children with heart disease in those countries is necessary; that they would contribute to patient care and medical education, would uncover the magnitude of the problem and would open ways to its future solution. The possibility of utilization of the facilities in the Western countries must also be considered.     

Food insecurity in households of children receiving care at a paediatric obesity management clinic in Montreal: Overall prevalence and changes associated with the COVID-19 pandemic

ObjectivesFood insecurity and paediatric obesity are two major public health issues in Canada that may have been exacerbated by the COVID-19 pandemic. We assessed food insecurity and its correlates among households of children receiving care at a paediatric obesity management clinic in Montreal. We also assessed whether the prevalence of food insecurity among households of children who received care during the COVID-19 pandemic differed from those who received care before it.MethodsThis is a retrospective, cross-sectional analysis of medical records of children (2 to 17 years) who received care at a paediatric obesity management clinic in Montreal (Maison de santé prévention – Approche 180 [MSP-180]). Children’s household food security status was assessed using Health Canada’s Household Food Security Survey Module.ResultsAmong the 253 children included in the study, 102 (40.3%) lived in households with moderate (n=89; 35.2%) or severe food insecurity (n=13; 5.1%). Food insecurity was more prevalent in households of children who were first- or second-generation immigrants compared with those who were third generation or more (48.3% versus 30.1%; P=0.03). Prevalence of food insecurity among households of children who received care during the COVID-19 pandemic was 5.5% higher than among those who received care before the pandemic, but the difference was not statistically significant (39.6% versus 45.1%; P=0.65).ConclusionsForty per cent of children treated at this paediatric obesity clinic lived in a food insecure household. This prevalence may have increased during the first year of the COVID-19 pandemic, but statistical power was insufficient to confirm it.     

Pediatric oncology in the third world

With 90% of world children living in developing countries and a rising cancer incidence, the third world bears the greatest burden of pediatric cancer. Pediatric cancers today are highly treatable, but 80% of children with malignancies die because they live in the developing countries where access to medical care is inadequate. Pediatric cancer care is expensive and available at only a few centers, which deal with excessive patient numbers and are staffed by inadequate numbers of physicians and nurses. There are marked geographic variations in incidences and presentations observed in the spectrum of pediatric malignancies. Initiatives to improve cancer care include setting up worldwide pediatric care units; establishing standard guidelines for treating patients; undertaking research and lobbying international organizations like the World Health Organization, United Nations Children's Emergency Fund (UNICEF), International Union Against Cancer (UICC), and the International Society of Pediatric Oncology (SIOP); to make chemotherapy, supportive care drugs, and opioids for palliation uniformly available. New outreach training programs would alleviate manpower shortages by linking centers from the two world regions for training and facilitate collaboration with international organizations.     

Agreement of injury reporting between primary care medical record and maternal interview for children aged 0-3 years: implications for research and clinical care.

OBJECTIVE: To assess agreement of injury reporting between primary care medical record and maternal interview. METHODS: Cross-sectional study of data from a randomized controlled trial of home visiting. The setting was Hawaii's Healthy Start Program (HSP). Subjects comprised a population-based sample of children in at-risk families with 3 years of primary care medical records and maternal interviews (n = 443). Outcome measures were percentage of children injured unintentionally and mean number of injuries per child in the first 3 years of life by primary care medical record and maternal interview. RESULTS: We identified 490 injuries: 48% by primary care medical record, 22% by maternal interview, and 30% in both sources. More children were reported injured by primary care medical record than maternal interview (51% vs 39%, P< .001). The mean number of injuries per child was 0.87 by primary care medical record and 0.51 by maternal interview (difference 0.36, 95% confidence interval 0.27-0.45, P< .001). Agreement between data sources was fair (kappa = 0.47). CONCLUSIONS: This study estimates that 25% of childhood injuries may not be reported in the medical record, highlighting the need for reconsideration of the use of medical records as the gold standard for unintentional injury data. Caution should be used when interpreting injury data from one source, especially from families with stressful life situations. Poor communication regarding injuries between social service, primary care and urgent care providers may contribute to decreased quality of primary care and missed opportunities for injury prevention.     

Providing a primary care medical home for children and youth with cerebral palsy

All primary care providers will care for children with cerebral palsy in their practice. In addition to well-child and acute illness care, the role of the medical home in the management of these children includes diagnosis, planning for interventions, authorizing treatments, and follow-up. Optimizing health and well-being for children with cerebral palsy and their families entails family-centered care provided in the medical home; comanagement is the most common model. This report reviews the aspects of care specific to cerebral palsy that a medical home should provide beyond the routine health care needed by all children.     

Current outlook of childhood cancer epidemiology in a middle-income country under a public health insurance program

In Mexico, childhood cancer (0–18 years) is treated in a multidisciplinary way while providing care for more than half of the affected children through a public medical insurance. This insurance is given to all children who do not have any health care coverage in Mexico. This program is offered to the poorest of all Mexicans. All the children with this disease are submitted to pathology diagnosis and treatment according to national treatment protocols from 57 accredited medical institutions. From 2007 to 2015, a total of 24,039 children with cancer have been registered; the male gender predominates by 55%. The highest incidence was in the group aged between 0 and 4 years. Every year, there has been an increment in registration. In 2015, there were 3,433 new patients with an incidence of 150.1/million. In the same year, the incidence for all types of leukemia increased to 89.5/million. But for acute lymphoblastic leukemia, the incidence was found to be 79.8/million, which is extremely high. The mortality rate for all these patients in 2015 was 5.3/100,000. However, with regard to children aged between 15 and 18 years, the mortality rate was 8.5/100,000. Abandonment rate was 10%, and there were nine state institutions that had a mortality rate between 25% and 50% among their patients. Coincidentally, as per the Human Development Index, the parameters for education, health, and income were low for those nine institutions. The purpose of this work is to show the epidemiology and the burden we are facing due to this disease.     

Recommendations for the structure and equipment of pediatric oncologic centers

The yearly incidence of cancer in children and adolescents within Germany is about 2200. The regular medical care for these children is effected within prospective multicenter trials of the DAL and GPO respectively. These trials achieved excellent results and gained high international reputation. Following an initial funding by the Bundesministerium für Forschung und Technology the continuation of these trials nowadays is fully dependent on private third parties financial aid especially from the Deutsche Krebshilfe. Guarantee of progress in clinical research and of improvement in patient care as well is closely related to establishing pediatric cancer centers. Accruing about 80 new patients per year such centers have an optimum size justifying establishing stabile substructures. Integrated basic research and organization of special clinical domaines need a differentiated structure of management and a sufficient number of qualified personnel in time nonlimited positions. The recommendation of the Arbeitsgemeinschaft Deutscher Tumorzentren from 1979 for personnel equipment is largely insufficient with respect to the inpatients nursing staff for pediatric oncology units. A basic equipment of 1.75 nurses per patient and additional nursing staff with specific functions would seem appropriate as demonstrated by analyses and calculations within the last part of our recommendations. The ADT recommendations are also insufficient with respect to secretaries and documentation assistants. Concerning the physicians staff the ADT recommendations just need an adaption to the changes in working time in accordance with the tariffe. These recommendations, however, urgently need to be realized. The necessary staff for psycho-social work has been incorporated into our recommendations for the first time. The ratio of patient rooms to function rooms (excluding laboratories) in pediatric oncology centers diposing of an outpatient area and a day clinic should be about 1:3. Deficiencies in the personnel equipment and the generally pronounced lack in function rooms as well are hampering the daily work and have negative impact on the quality of care as experienced by the patient on the safety of medical and nursing practice and on the quality of teaching, medical education and advanced training.     

Issues related to providing quality pediatric palliative care in the community

The medical practitioner in the community is in a unique position to assist children and their families from the time of diagnosis with a life-threatening condition through to the end of life. The purpose of this article is to inform medical practitioners who care for children with complex, chronic, and life-limiting conditions about pediatric palliative care in the community. It is intended as a guide to improve understanding about (1) the misconceptions and barriers surrounding the provision of care in the community for children with chronic, complex, and life-limiting conditions; (2) the availability of services for care in the community; (3) challenges concerning out-of hospital do-not-attempt-resuscitation orders for children; and (4) reimbursement issues that impact the provision of care.     

Diagnostic delay in Crohn's disease

The interval between the onset of symptoms and confirmation of the diagnosis of Crohn's disease in children is often many months or years. A number of factors contribute to this diagnostic delay, but the most significant appear to be delay in the patient seeking initial medical help and failure of the medical practitioner to consider the diagnosis at the time of the first medical contact. In this review of 55 children with Crohn's disease the intervals between onset of symptoms, first presentation and diagnosis were examined and the causes of diagnostic delay determined. The main reason a diagnosis was not made at first presentation was because of ignorance of the fact that Crohn's disease could occur in children. In older children, the combination of tiredness, lethargy and iron deficiency anaemia with vague or intermittent abdominal pain was a frequent cause of diagnostic difficulty. However, even in the absence of major gastrointestinal symptoms, the significance of growth failure and delayed puberty was usually recognised if the patient was referred to a paediatrician. Diagnostic delay could well be reduced if medical practitioners involved in the primary care of children were educated to recognise the various ways in which Crohn's disease presents in this age group. Offprint requests to: S. W. Beasley     

Clinical management considerations in long-term survivors with trisomy 18

As many as 90% or more of children with trisomy 18 die within the first year of life. A review of six patients with trisomy 18 documented by karyotype surviving past 1 year of age and of the trisomy 18 files of the Support Organization for Trisomy 18 and 13 indicated that a small number of children with trisomy 18 survive beyond their first year of life; a few live into their teens and twenties. In addition to medical problems that are unique to this chromosomal syndrome, these patients present complex medical problems common to all persons with chromosomal anomalies. The primary and tertiary care consultants who are able to provide knowledge and sensitive supportive care to children with trisomy 18 and to their parents are performing a service of significant benefit, no matter how brief the life span of the child may be.     

Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children's Health

OBJECTIVE: To assess the extent to which parents of children with autism compared with parents of children with asthma or other special health care needs report receiving primary care for their child consistent with the American Academy of Pediatrics medical home model. DESIGN: Population-based cross-sectional study. SETTING: National Survey for Children's Health 2003-2004 telephone interview. PARTICIPANTS: Parents of 495 children with autism, parents of 6716 children with asthma, and parents of 11,403 children with other special health care needs without asthma. Main Exposures Autism and other special health care needs including asthma. MAIN OUTCOME MEASURES: Medical home score and components of care, as follows: personal provider and preventive; family-centered, compassionate, and culturally appropriate; accessible; comprehensive; and coordinated. RESULTS: The odds of parents reporting care consistent with that in a medical home were less likely for children with autism (odds ratio, 0.45; 95% confidence interval, 0.30-0.66) and more likely for children with asthma (odds ratio, 1.17; 95% confidence interval, 1.06-1.30) compared with children with other special health care needs (1 [reference]). These differences persisted even after controlling for condition severity, personal characteristics, and insurance status. Specific components of a medical home less prevalent among children with autism than among children with other special health care needs included family-centered, comprehensive, and coordinated care. CONCLUSION: Although we could not evaluate the reasons why, a large percentage of children with autism do not receive primary care consistent with that in a medical home.     

Medical Home for Adolescents: Low Attainment Rates for Those With Mental Health Problems and Other Vulnerable Groups

BackgroundThe importance of the medical home for children has been demonstrated but has not been examined comprehensively for adolescents. Adolescence is a unique period of physical, cognitive, and psychosocial changes when many mental disorders first emerge; thus, receiving care within a medical home could improve well-being. This study examines rates of medical home attainment and its components for adolescents and subgroups, including those with mental health conditions.MethodsUtilizing the 2007 National Survey of Children’s Health, we determined the following for adolescents aged 10 to 17 years (n = 45 897): 1) rates of medical home attainment and its 5 components (usual source of care, having a personal doctor, and receiving needed referrals, effective care coordination, and family-centered care); and 2) subgroup differences; gender, race/ethnicity, income, insurance, region, language spoken at home, respondent education, and the presence of mental health conditions.ResultsFifty-four percent of adolescents had a past-year medical home. Rates were lower for minority youth compared to whites; lower-income and uninsured youth; those in households that are non–English speaking in which the respondent did not have some college; and those with mental health as opposed to physical health conditions (all P < .01). Patterns of disparities in the medical home components were similar, and rates were lowest for effective care coordination and family-centered care components.ConclusionsNearly half of adolescents lacked a medical home in the past year. Even lower rates for subgroups highlight the need to increase access to comprehensive quality health care. Efforts to improve effective care coordination and family-centered care could result in higher quality of care for all children and adolescents, and specifically for disadvantaged adolescents and those with mental health conditions.     

Children with medical complexity in Canada

The burden of chronic disease is placing pressure on the Canadian health care system. A small but important chronic disease population is children with medical complexity, defined as individuals with: high family-identified needs; complex chronic disease necessitating specialized care; functional disability; and high health care utilization. These patients present a challenge to community providers who are expected to provide holistic care and manage complex issues, often with a paucity of services and supports. Alternative models of care may address the complex needs of this population. In addition, strategies can be implemented in community practices that may assist with the care of children with medical complexity such as collaborative care, engagement of key workers, focus on goal-directed care and use of care plans. The paediatric community should engage in health care reform discussions focused on chronic disease to ensure that the complex needs of these children are met.     

Medical home disparities between children with public and private insurance

ObjectiveTo compare the prevalence of a medical home for children with public versus private insurance and identify components of the medical home that contribute to any differences.MethodsWe performed a secondary data analysis of the 2007 National Survey of Children's Health. A medical home was defined as meeting each of 5 components: 1) usual source of care; 2) personal doctor/nurse; 3) family-centered care; 4) care coordination, if needed; and 5) no problems getting a referral, if needed. We estimated the national prevalence of the medical home and its components for children with public versus private insurance. Comparisons were made using logistic regression, unadjusted and adjusted for sociodemographic factors.ResultsA total of 67% of privately insured children met all 5 components of the medical home, compared with only 45% of publicly insured children (P < .001). The gap in medical home prevalence between public and private groups remained significant after controlling for sociodemographic characteristics (public vs private adjusted odds ratio [AOR] 0.82; 95% confidence interval [95% CI] 0.73–0.92). Over 90% of children in both groups reported having a usual source of care and a personal doctor/nurse. Only 58% of publicly insured children reported family-centered care, compared with 76% of privately insured children (P < .001). This difference was significant after adjustment for sociodemographic characteristics (public vs private AOR 0.87; 95% CI 0.77–0.99).ConclusionsSignificant medical home disparities exist between publicly and privately insured children, driven primarily by disparities in family-centered care. Efforts to promote the medical home must recognize and address determinants of family-centered care.     

Transition to adult care in sleep medicine

More children with chronic and complex care needs are transitioned to adulthood due to advancements in medical technology including the use of non-invasive ventilation [NIV] at home and innovative medical therapies. Sleep medicine is becoming a common and at times vital component of the management plan. Various challenges are experienced in transitioning sleep patients depending on the underlying condition. These include the direct conflict between the desires of a young person for independence and their declining ability to provide self-care in neuromuscular patients, the behavioural challenges inherent in the management of children with various syndromes and the funding of equipment, care needs and multidisciplinary team input in an already resource limited adult setting. These patients should be transitioned in an early and coordinated approach following core principles of transition. Ongoing advocacy is required to raise awareness of the increased trend for technology supported young people being transitioned. Further research is required to track and assess the transition process in patients with various sleep conditions.