Exploring treatment decision-making at diagnosis for children with advanced cancer in low- and middle-income countries.

PURPOSE: Global childhood cancer survival outcomes correlate with regional contextual factors, yet upfront treatment decision-making for children with advanced or poor prognosis cancer in low- and middle-income countries (LMICs) is not well understood. This study aimed to (1) characterize the landscape of contextual factors that shape physician decision-making at diagnosis for these children in LMICs and (2) describe physician rationales for if/when to offer treatment with non-curative intent, including how they define "poor prognosis" during treatment decision-making. METHODS: An international panel of pediatric oncologists practicing in LMICs participated in two focus groups structured for the collaborative generation of factors influencing treatment decision-making, including consideration of non-curative treatment pathways at diagnosis. Thematic analysis of qualitative data was conducted, followed by member checking. RESULTS: Eleven pediatric oncologists participated, representing all global regions defined by the World Health Organization. Participants identified a broad range of factors influencing decision-making across multiple levels, including the individual, hospital, health system, community, and country levels. All participants agreed that treatment with non-curative intent could be offered at diagnosis in certain contexts, and diverse definitions for poor prognosis were described. CONCLUSIONS: Upfront treatment decision-making for children with advanced or poor prognosis cancer in LMICs is variable and challenging. Difficulties with decision-making in LMICs may be amplified by inconsistent definitions of poor prognosis and underrepresentation of the factors that influence treatment decision-making within existing decision-making frameworks or childhood cancer treatment guidelines. Future research should explore decision-making approaches, preferences, and challenges in depth from the perspectives of pediatric cancer patients, families, and multidisciplinary clinicians.

Enhancement of paediatric oncology pharmacy practices in a low-middle-income country through teaching and training using the My Child Matters Grant.

The development of a successful oncology pharmacy system includes competency training, cost-efficient procurement, proper storage, preparation and administration of chemotherapy, and appropriate waste disposal. Low-middle-income countries such as Pakistan face several challenges within the realm of oncology pharmacy such as the unavailability of training programmes, resources and financial support, and inconsistencies in the safe handling of cytotoxic drugs. The Indus Hospital and Health Network (IHHN) is among the pioneers of oncology pharmacy practices in Pakistan, with a well-established Oncology Pharmacy Team and chemotherapy preparation in accordance with the United States Pharmacopeia 797 and 800 safety guidelines. The My Child Matters Grant was awarded by the Sanofi Espoir Foundation to the Department of Paediatric Hematology and Oncology at IHHN for holistic improvement in childhood cancer care through teaching, training and capacity building. Partnerships were formed with five public-sector paediatric oncology units nationwide. Initiatives were taken to improve oncology pharmacy practices including teaching and training courses, in-person assessment visits, and mentorship and liaison efforts. Despite prevailing challenges, promising improvements were noted at each centre. However, Pakistan needs to establish a national plan for childhood cancer with the creation of regional organisations for the training and monitoring of oncology pharmacists. Centralisation of pharmacy operations within hospitals is essential to maintain the availability, storage, preparation and administration standards of chemotherapy.

Implementation of evidence-based psychosocial care in six pediatric oncology units across Pakistan.

BACKGROUND: Despite rising childhood cancer incidence, low-middle income countries often fall short of quality resources to prioritize and develop psycho-oncology services. Patients and families suffering from cancer are subject to great psychological distress and require continuous psychosocial support. Unfortunately, a lack of mental health awareness and trained providers remains a pertinent issue in resource-strained countries such as Pakistan. METHODS: IHHN has a well-established Psychosocial Department for pediatric oncology patients. Mental health counseling, child life, palliative care, bereavement and, social support are provided by a team of trained psychologists and social workers. In an effort to promote the implementation of this psychosocial model, partnerships were formed with public-sector pediatric oncology units and a structured one week online training module was conducted followed by a 1 week hands-on training. RESULTS: Of the total 67 participants registered, 24 were eligible for certificates. The course was open to healthcare workers around the country, considering that dedicated psychosocial personnel are not present in all units. The highest number of participants were from Karachi, accounting for 56.7% and were psychologists, 32.8%. On feedback, all participants said they would recommend this course to others and 80% chose self-motivation as the reason for enrolling compared to 12% who chose workplace requirement and 4% chose certification. Psychosocial workers selected for hands-on training were empowered to implement the POD model at their units and mentorship was continued after the training. CONCLUSION: Establishment of counseling and mental health services must be prioritized and integrated into childhood cancer healthcare delivery. Further studies are needed for establishing psychosocial models in low resource settings.

Resilient health care in global pediatric oncology during the COVID-19 pandemic.

BACKGROUND: In the face of unprecedented challenges because of coronavirus disease 2019, interdisciplinary pediatric oncology teams have developed strategies to continue providing high-quality cancer care. This study explored factors contributing to health care resilience as perceived by childhood cancer providers in all resource level settings. METHODS: This qualitative study consisted of 19 focus groups conducted in 16 countries in 8 languages. Seven factors have been previously defined as important for resilient health care including: 1) in situ practical experience, 2) system design, 3) exposure to diverse views on the patient's situation, 4) protocols and checklists, 5) teamwork, 6) workarounds, and 7) trade-offs. Rapid turn-around analysis focused on these factors. RESULTS: All factors of health care resilience were relevant to groups representing all resource settings. Focus group participants emphasized the importance of teamwork and a flexible and coordinated approach to care. Participants described collaboration within and among institutions, as well as partnerships with governmental, private, and nonprofit organizations. Hierarchies were advantageous to decision-making and information dissemination. Clinicians were inspired by their patients and explained creative trade-offs and workarounds used to maintain high-quality care. CONCLUSIONS: Factors previously described as contributing to resilient health care manifested differently in each institution but were described in all resource settings. These insights can guide pediatric oncology teams worldwide as they provide cancer care during the next phases of the pandemic. Understanding these elements of resilience will also help providers respond to inevitable future stressors on health care systems.

Achievements and pitfalls in improving Pediatric Oncology Nursing standards: A public-private partnership project.

Rationale: Approximately 8,000 new cases of pediatric cancer arise annually in Pakistan. However, there is a dire survival rate of 30-35% due to various factors, especially a lack of competent nurses in pediatric oncology care. Public-private partnerships (PPP) supported by a My Child Matters (MCM) Grant from Sanofi Espoir Foundation was granted to Indus Hospital & Health Network (IH&HN) to improve pediatric nursing standards. Methods: Starting in 2016, nurses from hospitals across Pakistan were enrolled in a continuing education program, which included a comprehensive, hands-on training component. A group chat was created following the training for communication and mentorship regarding challenges faced locally. Results: Seventy-seven pediatric oncology nurses were successfully trained by IH&HN over three years. Discussion: Challenges included lack of government funding, shortage of specialist nurses, frequent shifting of nurses away from pediatric care, and indifferent attitudes. Success of the project could have been maximized if trained nurses were motivated and retained by hospitals. Conclusion: Development and maintenance of PPP in national healthcare systems is essential to improve pediatric oncology nursing care.

Impact of the coronavirus disease 2019 (COVID-19) pandemic on pediatric oncology care in the Middle East, North Africa, and West Asia region: A report from the Pediatric Oncology East and Mediterranean (POEM) group.

BACKGROUND: Childhood cancer is a highly curable disease when timely diagnosis and appropriate therapy are provided. A negative impact of the coronavirus disease 2019 (COVID-19) pandemic on access to care for children with cancer is likely but has not been evaluated. METHODS: A 34-item survey focusing on barriers to pediatric oncology management during the COVID-19 pandemic was distributed to heads of pediatric oncology units within the Pediatric Oncology East and Mediterranean (POEM) collaborative group, from the Middle East, North Africa, and West Asia. Responses were collected on April 11 through 22, 2020. Corresponding rates of proven COVID-19 cases and deaths were retrieved from the World Health Organization database. RESULTS: In total, 34 centers from 19 countries participated. Almost all centers applied guidelines to optimize resource utilization and safety, including delaying off-treatment visits, rotating and reducing staff, and implementing social distancing, hand hygiene measures, and personal protective equipment use. Essential treatments, including chemotherapy, surgery, and radiation therapy, were delayed in 29% to 44% of centers, and 24% of centers restricted acceptance of new patients. Clinical care delivery was reported as negatively affected in 28% of centers. Greater than 70% of centers reported shortages in blood products, and 47% to 62% reported interruptions in surgery and radiation as well as medication shortages. However, bed availability was affected in <30% of centers, reflecting the low rates of COVID-19 hospitalizations in the corresponding countries at the time of the survey. CONCLUSIONS: Mechanisms to approach childhood cancer treatment delivery during crises need to be re-evaluated, because treatment interruptions and delays are expected to affect patient outcomes in this otherwise largely curable disease.

Pediatric discordant lymphoma with classic Hodgkin lymphoma in cervical lymph nodes and high-grade B-cell non-Hodgkin lymphoma in bone marrow: a case report from Pakistan.

Discordant lymphoma (DL) is an uncommon condition in which two or more histologically different types of lymphomas are present at distinct anatomical sites in the same patient. Here, we report a case of a pediatric patient under 10 years old presenting with symptoms of general sickness with cervical lymphadenopathy, abdominal distension and an abdominal mass. Upon conducting investigations, classic Hodgkin lymphoma (CHL) was detected in the cervical lymph nodes, and high-grade B-cell non-Hodgkin lymphoma was detected in the bone marrow and abdominal mass. The patient was therefore diagnosed with DL. The boy was initially diagnosed with CHL but proceeded to have aggressive disease progression, due to which further workup was done. In the past, literature reports have been published for adult cases of DL, and currently, research is being conducted to formulate treatment protocols for it. However pediatric cases of DL remain widely undiscussed. Since we are dealing with a rare or widely underreported condition, we found it significant to elaborate on its clinical presentation, treatment plan, complications and prognosis.

Functions of patient- and family-centered pediatric cancer communication in Pakistan.

Background: Communication is an essential aspect of high-quality patient- and family-centered care. A model for pediatric cancer communication developed in the United States defined eight communication functions. The purpose of this study was to explore the relevance of these functions in Pakistan as part of an effort to understand the role of culture in communication. Materials and methods: Semi-structured interviews were conducted with 20 clinicians and 18 caregivers of children with cancer at two major cancer centers. Interviews were conducted in Urdu or English and transcribed and translated as necessary. Two independent coders used a priori codes related to the communication model as well as novel codes derived inductively. Thematic analysis focused on operationalization of the functional communication model. Results: Clinicians and caregivers in Pakistan discussed the importance of all eight communication functions previously identified including: information exchange, decision-making, managing uncertainty, enabling family self-management, responding to emotions, supporting hope, providing validation, and building relationships. The operationalization of these functions was influenced by Pakistani cultural context. For example, information-exchange included the importance of addressing preconceptions and community myths, while managing uncertainty included strong references to religion and faith-based coping. Essential to all eight functions was trust between the family and the medical team. Discussion: These findings support the use of this functional communication model in diverse pediatric oncology settings and emphasize the importance of trust. Culturally sensitive operationalization of these functions could inform the adaptation of tools to measure communication and interventions aimed at supporting the needs of parents of children with cancer.

Barriers and Facilitators of Quality Family-Centered Communication in Pakistan.

PURPOSE: Communication is a fundamental aspect of patient- and family-centered care. Unfortunately, there is a dearth of evidence regarding pediatric cancer communication in low- and middle-income countries, where over 90% of all children with childhood cancer live. The purpose of this study was to explore barriers and facilitators of quality communication within two pediatric cancer centers in Pakistan. METHODS: Semistructured interviews were conducted with 20 multidisciplinary pediatric cancer clinicians and 18 caregivers of children with cancer at Children's Hospital of Lahore and Indus Hospital in Karachi, Pakistan. Interviews were conducted in English or Urdu, audio-recorded, transcribed, and translated to English. Two researchers coded each transcript using an inductively derived codebook. Thematic content analysis focused on barriers and facilitators of high-quality communication. RESULTS: Pakistani clinicians and caregivers identified factors that affected the quality of patient-centered cancer communication. These included structural factors including setting, available interpreters, documentation, patient volume, teamwork, and financial support. Clinician-level communication barriers and facilitators included communication training, clinician distress/boundaries, and the ability to have recurrent conversations. Patient or family characteristics affecting communication included education, income status, primary language, and geography; the child's specific disease type; and relational elements such as social support, empowerment, and split decision makers. Participants identified existing or potential interventions related to each factor. CONCLUSION: Multilevel factors serve as either barriers or facilitators for pediatric cancer communication in Pakistan. Identification of these elements of communication is an essential step toward interventions aimed at improving patient- and family-centered care in resource limited settings.

Communication transforms the impact of the COVID-19 pandemic on children with cancer and their families.

BACKGROUND: The COVID-19 pandemic altered healthcare systems globally, causing delays in care delivery and increased anxiety among patients and families. This study examined how hospital stakeholders and clinicians perceived the global impact of the COVID-19 pandemic on children with cancer and their families. METHODS: This secondary analysis examined data from a qualitative study consisting of 19 focus groups conducted in 8 languages throughout 16 countries. A codebook was developed with novel codes derived inductively from transcript review. In-depth analysis focused on the impact of the COVID-19 pandemic on children with cancer and their families. RESULTS: Eight themes describing the impact of the pandemic on patients and their families were identified and classified into three domains: contributing factors (COVID-19 Policies, Cancer Treatment Modifications, COVID-19 Symptoms, Beliefs), patient-related impacts (Quality of Care, Psychosocial impacts, Treatment Reluctance), and the central transformer (Communication). Participants described the ability of communication to transform the effect of contributing factors on patient-related impacts. The valence of impacts depended on the quality and quantity of communication among clinicians and between clinicians and patients and families. CONCLUSIONS: Communication served as the central factor impacting whether the COVID-19 pandemic positively or negatively affected children with cancer and families. These findings emphasize the key role communication plays in delivering patient-centered care and can guide future development of communication-centered interventions globally.

Pilomatrix Carcinoma In A 4-Year-Old Child With An Unusual Presentation.

Pilomatrix carcinoma is a rare, locally aggressive variant of pilomatrixoma with a high rate of recurrence and risk of distant metastasis. We report an unusual presentation of a pilomatrix carcinoma in a 4-year-old male child who presented with recurrent lesions on his left cheek. At the age of 1 month of life, he presented with a soft tissue swelling on his left cheek. The lesion showed a circumscribed proliferation of basaloid cells with central areas of eosinophilic ghost shadow cells and intermediate cells. Basaloid nests showed round to oval, hyperchromatic nuclei with open nuclear chromatin, prominent nucleoli and frequent mitoses but no marked nuclear pleomorphism or infiltration was identified. The lesion recurred twice at the same site. Both recurrences showed similar morphology as the primary tumour however there were extensive areas of stromal necrosis, infiltrating edges, frequent mitoses with atypical forms, and lymphovascular invasion. There was no marked nuclear pleomorphism. Morphological features favoured a diagnosis of pilomatrix carcinoma. The child is still on follow-up and no recurrence has been identified to date. Pilomatric carcinoma is rarely reported in infants. Due to its rarity, aggressive histological features may be missed.

Utilizing Multilingual Methods and Rapid Analysis for Global Qualitative Research During a Pandemic.

Historically, qualitative research has complemented quantitative biologic and epidemiologic studies to provide a more complete understanding of pandemics. The COVID-19 pandemic has generated unique and novel challenges for qualitative researchers, who have embraced creative solutions including virtual focus groups and rapid analyses to continue their work. We present our experience conducting a multilingual global qualitative study of healthcare resilience among teams of pediatric oncology professionals during the COVID-19 pandemic. We provide an in-depth description of our methodology and an analysis of factors we believe contributed to our study's success including our use of technology, engagement of a large multilingual team, global partnerships, and framework-based rapid analysis. We hope these techniques may be useful to qualitative researchers conducting studies during the current pandemic, as well as for all pediatric oncology studies including multiple languages or geographically disparate subjects.

Primary Hodgkin's Lymphoma of bone in 7-year-old- an exceptional case report of youngest child in literature.

Hodgkin lymphoma (HL) is mainly considered a nodal disease but extra nodal involvement can also be seen with variable frequency. Solitary bone involvement in HL known as Primary osseous hodgkin lymphoma (POHL) is very rare. It is defined as a lymphoma that is restricted to the bone without any simultaneous organ or lymph node involvement at the time of initial diagnosis. Primary Hodgkin lymphoma of the bone can be very challenging to diagnose because of its rarity especially in children and its variable presentation. Here we report the youngest case of POHL in a girl 7 years of age. She presented with the left leg pain and B-symptoms of fever and weight loss. Initial workup and imaging were suggestive of infection or a bone tumor. Bone biopsy of left hip joint after the multiple courses of antibiotics revealed Reed Sternberg cells in the mixed inflammatory background with CD30 and PAX-5 immunohistochemical positivity confirming classical hodgkin lymphoma, mixed cellularity type. CD99 and CD1a were negative excluding ewing sarcoma and langerhan cell Histiocytosis respectively. Absence of significant lymphadenopathy or visceromegaly on staging computerized tomography (CT) scan confirmed a very rare POHL. She received standard conventional chemotherapy with radiation. Our patient is in remission for five years after treatment.