Normalization of Symptoms in Advanced Child Cancer: The PediQUEST-Response Case Study

Maria Laura Requena; Madeline Avery; Angela M Feraco; Luciano G Uzal; Joanne Wolfe; Veronica Dussel

doi:10.1016/j.jpainsymman.2021.12.009

Normalization of Symptoms in Advanced Child Cancer: The PediQUEST-Response Case Study

J Pain Symptom Manage. 2022 Apr;63(4):548-562. doi: 10.1016/j.jpainsymman.2021.12.009. Epub 2022 Jan 11.

Authors

Maria Laura Requena¹, Madeline Avery², Angela M Feraco³, Luciano G Uzal¹, Joanne Wolfe⁴, Veronica Dussel⁵

Affiliations

¹ Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy (M.L.R., L.G.U., V.D.), Buenos Aires, Argentina.
² Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute (M.A., J.W.), Boston, Massachusetts, USA.
³ Department of Pediatric Oncology, Dana-Farber Cancer Institute (A.M.F., J.W.), Boston, Massachusetts, USA; Department of Pediatrics, Boston Children's Hospital (A.M.F., J.W.), Boston, Massachusetts, USA; Harvard Medical School (A.M.F., J.W.), Boston, Massachusetts, USA.
⁴ Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute (M.A., J.W.), Boston, Massachusetts, USA; Department of Pediatric Oncology, Dana-Farber Cancer Institute (A.M.F., J.W.), Boston, Massachusetts, USA; Department of Pediatrics, Boston Children's Hospital (A.M.F., J.W.), Boston, Massachusetts, USA; Harvard Medical School (A.M.F., J.W.), Boston, Massachusetts, USA.
⁵ Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy (M.L.R., L.G.U., V.D.), Buenos Aires, Argentina; Dana-Farber / Boston Children's Cancer and Blood Disorders Center (V.D.), Boston, Massachusetts, USA. Electronic address: veronica_dussel@dfci.harvard.edu.

PMID: 35031505
DOI: 10.1016/j.jpainsymman.2021.12.009

Abstract

Context: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness.

Objectives: To identify barriers to effective symptom management in pediatric advanced cancer.

Methods: Using a qualitative multiple case study we refined the Pediatric Quality of Life and Evaluation of Symptoms Technology Response to the Pediatric Oncology Symptom Experience (PediQUEST Response), a pediatric palliative care (PPC) intervention. Twenty-three children aged ≥2 years old with advanced cancer, their parents and primary and PPC clinicians were enrolled. Children and parents reported symptoms weekly over 4-months using the Memorial Symptom Assessment Scale (MSAS) administered by an electronic system (PediQUEST). When symptom distress episodes (SDEs) were reported (MSAS symptom score ≥33) we studied symptom management processes using interviews of family members/clinicians, and chart abstractions. Data were coded and analyzed using grounded theory and NVivo software.

Results: Children reported 308 SDEs within 193 surveys and parents 529 SDEs in 165 surveys administered. We conducted 85 and 88 interviews with families and clinicians respectively. While we confirmed the presence of known barriers, we identified a prominent theme, that symptoms were "normalized." Patients, parents, and all clinicians, including PPC specialists, got accustomed to high symptom burden and lacked expectations that distress could be alleviated. We defined "normalization of symptoms," as the process by which symptom related suffering is appraised as unavoidable.

Conclusion: Normalization of symptoms is a pervasive barrier enacted by all involved in caring for children with advanced cancer. Strategies to overcome normalization are critical to ease child distress.

Keywords: Pediatrics; attitudes; cancer; health knowledge; palliative care; patient care management; practice; qualitative research; symptom barriers; symptom management.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Child
Child, Preschool
Humans
Neoplasms* / therapy
Palliative Care
Parents
Quality of Life*
Surveys and Questionnaires