Quality of Life and Pain Experienced by Children and Adolescents With Cancer at Home Following Discharge From the Hospital

Abstract

An exploratory study was conducted to examine quality of life and pain experienced by pediatric cancer patients at home following discharge. Physical, cognitive, social, and emotional aspects of quality of life were measured, and how these may be affected by age, gender, diagnosis, and pain status. We also characterized intensity, location, and quality of pain experienced. A sample of 33 patients participating in a larger study was selected based on having pain on day of discharge, and having completed the Pediatric Quality of Life Inventory Generic, Cancer Module, Multidimensional Fatigue Scale, and the Adolescent Pediatric Pain Tool at home. Cancer diagnoses were leukemias/lymphomas (42.4%), brain/CNS tumors (27.3%), sarcomas (24.2%), or other (6.1%). More than half of patients reported pain (n=17; 51.5%). Patients with pain had more fatigue affecting quality of life (p=0.01), and lower physical and emotional functioning, leading to lower overall HRQOL scores (p=0.011). Females and adolescents reported worse emotional functioning (p=0.02 and p=0.05, respectively). Physical, cognitive, and social functioning was lowest among patients diagnosed with sarcomas (p=0.00, p=0.01, and p=0.04, respectively). It is important to understand the symptom experience of patients at home as a first step in moving towards optimal discharge teaching and treatment.

Frequency, Severity, and Distress Associated With Physical and Psychosocial Symptoms at Home in Children and Adolescents With Cancer

“…Only the pain item from the MSAS was included in the report. The pain data from the APPT were reported in another article (Duran et al, 2019). Only pediatric cancer patients were included, because the MSAS has been validated only in children and adolescents with cancer.…”

Assessing health-related quality of life in Chinese children and adolescents with cancer: validation of the DISABKIDS chronic generic module (DCGM-37)

“…We also found that children and adolescents with leukemia had higher HRQoL in all aspects of the DCGM-37measurement than those with sarcoma. Children with leukemia only receive chemotherapy, but children with sarcomas receive complex therapy, such as combined chemotherapy, radiotherapy, and surgery [ 26 ]. The latter group may therefore experience more side effects or complications [ 7 ].…”

Electronic Assessment and Tracking of Pain at Home: A Prospective Study in Children With Hematologic or Solid Tumors

“…Participants may have seen no point in using the app in the absence of pain. However, informing health professionals about the absence of pain is still clinically important and should represent the gold standard (Duran et al, 2019).…”

“…Regardless of the underlying cause, many children and adolescents with cancer experience pain at home (Duran et al, 2019), which can undermine their ability to perform age-appropriate activities (Linder & Hooke, 2019). Pain can severely affect the quality of life of the entire family (Van Schoors et al, 2018), who is already distressed by a sense of loss and turmoil ever since the cancer diagnosis (Mu et al, 2015).…”