Palliative Care Services for Children with Cancer, Current Situation, and Areas of Improvement
Authors: Elhabashy Safinaz , Eltonbary Khadiga , Wahdan Maha Magdy , Abdel-Rahman Nashwa Mohamed Mohamed 
Published: November 2024

Abstract

Background
Pediatric palliative care is a holistic approach that aims to enhance the quality of life of seriously ill children and their families. Despite the documented benefits, many barriers challenge early integration of such care.

Objective
The primary aim of the study is to evaluate the current situation of palliative care services for pediatric oncology patients from patient’s, parents’ and physician’s perspective and the secondary aim is to highlight the areas of improvement of palliative care services to provide better quality of life for pediatric oncology patients.

Methodology
A Cross-sectional questionnaire-based study was conducted on 80 parents/caregivers and young patients, in addition to all health care providers in the pediatric hematology/oncology unit at the Pediatric Hematology/Oncology Unit, Children's Hospital, Ain Shams University over six months. A validated Arabic version for PedsQL4 questionnaire was distributed to patients and/or their parents if feasible. The PedsQL is a 23-item instrument and consists of four domains: physical (eight items), emotional (five items), Social (five items), and School (five items) functioning. A 25 questions questionnaire was offered to physicians in the pediatric hematology oncology unit and other specialties treating hematology oncology patients. The questionnaire was based on review of literature, it was validated and offered to 3 physicians to check the applicability of the questionnaire. The physician perception section of the questionnaire covered confidence in and need for PPC, perceived appropriate referral timing of and barriers to PPC.

Results
The current study included the response of 19 parents of 2-4 years old children, 22 parents of 5-7 years old, 23 parents of 8-12 years old and 17 parents of 13-18 years old. Starting age of 5-12 yrs old children also reported their input. The mean score of physical domain was (69.1±21.1, 58.1±23.91, 66.47±26.48, 54.75±27.85, 60.87±27.05, 47.85±22.95, 52.2±24.40) respectively. The mean score of emotional domain (33.76±21.3, 33.86±26.0, 43.18±34.55, 48.92±29.30, 54.62±31.53, 35.3±24.58, 36.76±21.71) respectively. The mean score of social domain (78.92±19.8, 69.54±18.05, 77.28±24.91, 71.74±19.74, 79.14±19.28, 65.88±25.32, 67.94±24.56) respectively. Most school aged patients were home schooled. The worst reported score was the emotional domain especially among (13-18 years) as fear, anger and sadness were mostly reported by both parents and children. Among physicians involved with pediatric oncology patients, the response rate was 62%. All reported the lack of well- structured PPC service and the lack of specialty training in palliative care. The most common reported barrier was the lack of institutions offering PPC as well as the lack of trained manpower. Other common reported barrier was physicians` and parents` perception towards palliative care either physicians giving up or caregivers insisting on continuation of standard treatment. Almost half of physicians see that initiation of palliative care and home based palliation is necessary, 70% did not recommend referring to adult PC centers with the main concern being the lack of experience and knowledge of such centers with pediatric age group.

Conclusion
PPC is an essential element of care in patients with malignancy. The lowest score for quality of life were mainly for emotional domain as patients reported fear and worry from the disease prognosis. PPC is not a well established service in our center with most physicians considering PPC as equivalent to end of life care only. The main barrier was lack of manpower and PPC specialized institutions. To improve or initiate this service, specialty training in PPC is a with designation of team of health care professionals (nurse, pediatric oncologist, pain specialist).