Parent/Child Dyad Approach to Symptom Screening for Children With Cancer

Symptoms are common and often severely bothersome in pediatric patients receiving cancer treatments. In order to measure the extent of bothersome symptoms, the Symptom Screening in Pediatrics Tool (SSPedi) was developed. It is reliable, valid and responsive to change in pediatric patients aged 8-18 years receiving cancer treatments. Mini-SSPedi was developed for children 4-7 years and exhibits face and content validity. These instruments were developed to address the lack of appropriate symptom screening tools for this population. They are available in both self-report and proxy-report formats. Differences between child self-report and parent proxy-report quality of life (QoL) scores have been well described in pediatric populations. There has been increasing recognition that each reporter may have unique and valid perspectives. This has led to a suggestion to collect both child and parent report when possible. When used in clinical care, obtaining both child and parent report will commonly not be feasible. There are settings in which children will not be willing to independently report symptoms, such as when they are very ill. Unfortunately, it is particularly in this setting that obtaining symptoms reports is crucial. While young children may be able to independently report symptoms on a single occasion in the context of a carefully conducted research study, they are less likely to be able to repeatedly and independently report their symptoms. Finally, the burden and logistical complexity of separate child and parent reporting would be associated with considerable challenges for clinical implementation. In considering how routine symptom screening could be implemented into clinical practice, we hypothesized that a dyad approach, where SSPedi is completed by both the child and parent together, may be one way to address these challenges. Consequently, we developed and finalized the approach to co-SSPedi administration, with instruction that is easy to understand, resulting in dyads completing co-SSPedi correctly. To understand the relationships between the available forms of SSPedi (co-SSPedi, proxy-SSPedi and SSPedi), outstanding questions are how co-SSPedi scores compare to either proxy-report or self-report SSPedi and whether the co-SSPedi administration approach increases or decreases score variability. This study is designed to address these questions.

Sex

All

Minimum age

4 Years

Maximum age

18 Years

Inclusion Criteria:

* Child and guardian both understand English
* Child is 4 to 18 years of age
* Child has diagnosis of cancer or is a hematopoietic stem cell transplant (HSCT) recipient
* Child is inpatient or outpatient

Exclusion Criteria:

* Participants who have illness severity,
* cognitive disability, or
* visual impairment that preclude utilization of co-SSPedi, SSPedi/mini-SSPedi or proxy SSPedi according to the primary healthcare team

• BACKGROUNDDupuis LL, Johnston DL, Baggott C, Hyslop S, Tomlinson D, Gibson P, Orsey A, Dix D, Price V, Vanan M, Portwine C, Kuczynski S, Spiegler B, Tomlinson GA, Sung L. Validation of the Symptom Screening in Pediatrics Tool in Children Receiving Cancer Treatments. J Natl Cancer Inst. 2018 Jun 1;110(6):661-668. doi: 10.1093/jnci/djx250. PMID 29272441
• BACKGROUNDHyslop S, Dupuis LL, Baggott C, Dix D, Gibson P, Kuczynski S, Johnston DL, Orsey A, Portwine C, Price V, Spiegler B, Tomlinson D, Vanan M, Tomlinson GA, Sung L. Validation of the Proxy Version of Symptom Screening in Pediatrics Tool in Children Receiving Cancer Treatments. J Pain Symptom Manage. 2018 Jul;56(1):107-112. doi: 10.1016/j.jpainsymman.2018.03.025. Epub 2018 Apr 6. PMID 29630923