The Symptom Cluster Experience Profile Framework

Abstract

Purpose To present the novel Symptom Cluster Experience Profile (SCEP) Framework for guiding symptom research in adult-survivors of childhood cancers (ACC-survivors) and other subgroups at risk for high symptom burden. Data Sources Empirically-derived model of symptom cluster experience profiles, existing theoretical frameworks, data-based literature on symptoms and quality of life in ACC-survivors. Data Synthesis In a previous study, we generated a preliminary model to characterize subgroups of ACC-survivors with high-risk symptom cluster profiles. We developed the SCEP Framework that depicts symptom cluster experiences as subgroup-specific profiles that are driven by multiple sets of risk and protective factors. These risk and protective factors may directly and indirectly --through their effects on systemic stress -- contribute to or alleviate symptoms. Systemic stress instigates and sustains the symptom experience, which in turn is expressed through negative diffusion into other components of quality of life, such as functional status, general health perceptions, and overall quality of life. Conclusions The SCEP Framework is an initial approach to unbundle the complex heterogeneity that underlies the clustering of symptoms. By measuring a wide range of risk and protective factors in future studies of ACC-survivors and other subgroups at risk for high symptom burden, further development and validation of the SCEP Framework will occur. Implications for Nursing Research and Practice The SCEP framework can be used to specify mechanisms underlying symptom cluster profiles and derive interventions targeted to high-risk symptom profiles. Findings from future studies can be translated to risk-based surveillance and symptom management clinical practice guidelines.

Association Between the Prevalence of Symptoms and Health-Related Quality of Life in Adult Survivors of Childhood Cancer: A Report From the St Jude Lifetime Cohort Study

“…9-11 Symptoms commonly investigated in long-term survivors of childhood cancer include fatigue, neurocognitive problems, pain, psychological distress, and sleep disturbance. 6 Overall, 19% to 30% of survivors report fatigue 7,8 ; 11% to 21% report memory and task efficiency problems 12 ; 12% to 21% report pain 13 ; 8% to 13% report psychological distress 14,15 ; 14% report daytime sleepiness, and 17% report insomnia. 7,8 Although these findings are compelling, they are incomplete because symptoms related to physical health (eg, organ function) have not been included.…”

“…Third, the symptoms under investigation did not include fatigue and sleep disturbance, which are deemed important to survivors. 5,6 Therefore, the extent that these symptoms are associated with HRQOL and the variance in HRQOL explained by the symptoms might be underestimated.…”

“…6 For example, cranial radiation is related to the risk of emotional 15,22 and cognitive symptoms, 23 and thoracic radiation is related to cardiopulmonary symptoms. 24 Twelve symptom classes were constructed, including nine classes for physical symptoms and three for psychological distress (Appendix Table A1, online only).…”

“…3 Symptoms and HRQOL assessment provide unique insight into health status and help design appropriate interventions for survivorship care. 4 Research on symptom prevalence for adult survivors of childhood cancer is sparse [5][6][7][8] compared…”

Midlife women's symptom cluster heuristics

“…15–17 Investigators have defined clusters of symptoms women experience by using statistical procedures such as factor analysis in order to group similar symptoms and cluster analysis or latent class analysis to group women having similar patterns of symptoms or occasions on which similar symptoms occur. 1–4,6,8–18 This body of work indicates that common groups of co-occurring symptoms include hot flashes, sleep disruption, mood, cognitive, and pain symptoms. Some investigators have focused on whether these symptoms occur in a particular order, attempting to identify causal pathways among the symptoms, e.g.…”