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Prospective Evaluation of Symptoms and Quality of Life in Children With Cancer Over Time: Patient and Caregiver Proxy Reports

Mark, Melissa
http://orcid.org/0000-0002-5588-2683
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1535724458331922

Abstract Details

2018, MS, University of Cincinnati, Medicine: Clinical and Translational Research.
Background: Early integration of palliative care (PC) and the need to aggressively identify and treat symptoms has received an increased focus in pediatric oncology over the past two decades. Despite this, symptom burden and distress remains very high in children with cancer. There are very few prospective, longitudinal studies evaluating pain and symptom management in children with cancer from the time of diagnosis through the completion of therapy or death that includes both patient and family caregiver proxy reporting. Methods: Subjects were recruited from a large free standing children's hospital, Children's Hospital of The King's Daughters, in Norfolk, Virginia which sees about 75 new cancer diagnosis per year. Eligibility criteria included English-speaking newly diagnosed cancer patients between 7-21 years old and their primary family caregivers. Measures included in this study included the Memorial Symptom Assessment Scale (MSAS), Pediatric Quality of Life Inventory along with the specific cancer module (PedsQL, PedsQLCacer), and the Severity of Illness Scale (SOIS). MSAS, PedsQL, and PedsQLCancer were administered at each time point patients and corresponding proxy versions were administered to family caregivers at the same time points. The patient's primary oncologist completed the SOIS at each time point. Measures were completed at the following time points: Time zero: within 0-4 weeks of diagnosis or relapse, then at 1 month from enrollment, 3 months from enrollment, and then every 3 months while the patient was on therapy for the duration of the study period. Results: Forty-three patient-family caregiver dyads enrolled on the study. Over the study period, 10 patients died. Symptom prevalence was high in both patient-reported and caregiver reported groups. Caregiver-reported MSAS scores were increased significantly by patients age (p = 0.025) with parents of older patients reporting more/distressing symptoms. Patient-reported MSAS scores decreased (improved) significantly over time (p = 0.026). Caregiver-reported PedsQL scores were significantly higher (better) over time in survivors compared to patients who died (p = 0.005). In addition, higher SOIS score was significantly associated with lower patient-reported PedsQL score (p=0.023). Conclusion: In this prospective, longitudinal study of children with cancer and their family caregivers we found that symptom prevalence and corresponding distress continue to be highly prevalent and distressing as measured both by patients and proxy caregiver-reports. This is consistent with previous publications in this population. In addition, there are significant differences in outcomes comparing the PedsQL generic and PedsQL Cancer modules with patterns that are consistent between patient and caregiver-reports, and that severity of illness is more likely to correlate with QoL than prognosis or symptoms.
Erin Haynes, Dr.P.H. (Committee Chair)
Hilary Flint (Committee Member)
Maureen O'Brien, M.D. (Committee Member)
13 p.
Surgery
Pediatric Cancer; Quality of Life; Symptoms

Recommended Citations

Citations

  • Mark, M. (2018). Prospective Evaluation of Symptoms and Quality of Life in Children With Cancer Over Time: Patient and Caregiver Proxy Reports [Master's thesis, University of Cincinnati]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1535724458331922

    APA Style (7th edition)

  • Mark, Melissa. Prospective Evaluation of Symptoms and Quality of Life in Children With Cancer Over Time: Patient and Caregiver Proxy Reports. 2018. University of Cincinnati, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=ucin1535724458331922.

    MLA Style (8th edition)

  • Mark, Melissa. "Prospective Evaluation of Symptoms and Quality of Life in Children With Cancer Over Time: Patient and Caregiver Proxy Reports." Master's thesis, University of Cincinnati, 2018. http://rave.ohiolink.edu/etdc/view?acc_num=ucin1535724458331922

    Chicago Manual of Style (17th edition)

ucin1535724458331922
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This open access ETD is published by University of Cincinnati and OhioLINK.