Symptom Cluster Experience Profiles in Adult Survivors of Childhood Cancers

Finnegan, Lorna; Ferrans, Carol Estwing; Wilbur, Jo Ellen; Wilkie, Diana J.; Shaver, Joan

doi:10.1016/j.jpainsymman.2008.09.010

Cited by 31 publications

(52 citation statements)

References 54 publications

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“…This cluster of physical health, pain, and emotional concerns has previously been observed [8, 9, 22, 23]. Poor survivor-reported health was significantly associated with SI even after controlling for demographics, diagnosis and treatment factors, and depression.…”

Section: Resultssupporting

confidence: 73%

Psychosocial Late Effects in Pediatric Cancer Survivors: A Report From the Children's Oncology Group

Bitsko

Cohen

Dillon

et al. 2015

Pediatric Blood & Cancer

109

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Background This review was conducted to update the Children’s Oncology Group (COG) Long-Term Follow-Up Guidelines (COG-LTFU Guidelines; version 4.0) regarding screening for psychosocial late effects of pediatric cancer. Procedure Articles published between August 2009 and January 2011 that addressed psychosocial late effects of long-term survivors of pediatric cancer (n = 35) were reviewed by a multidisciplinary team of COG late effect experts. Results The majority of studies in this time period indicate that survivors experience few psychosocial problems in long-term survivorship. A critical subset, however, are at increased risk for psychosocial late effects secondary to treatment. Highlighted findings from this review include increased rates of suicidal ideation (SI), and health beliefs as robust predictors of SI, anxiety, and global distress. Survivors’ health beliefs were associated with their perceptions of physical limitations, overall late effects, and cancer-related pain. While many survivorship studies continue to specify risk factors for anxiety and post-traumatic stress symptoms (PTSS)/disorder (PTSD), others outcomes (e.g. developmental, interpersonal, and familial factors) appear to be emerging in importance. Conclusions Although the majority of childhood cancer survivors do not experience psychosocial problems, a subset will. The recent research findings have been included in the new COG-LTFU guidelines that will assist in the targeted assessment and treatment of survivors’ psychosocial health.

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Section: Resultssupporting

confidence: 73%

Psychosocial Late Effects in Pediatric Cancer Survivors: A Report From the Children's Oncology Group

Bitsko

Cohen

Dillon

et al. 2015

Pediatric Blood & Cancer

109

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“…16,17 Scant research supports the association between symptom prevalence and HRQOL in long-term survivors of childhood cancer. 5,8,18 The Childhood Cancer Survivor Study (CCSS) observed that survivors who reported more fatigue, sleep disturbance, and daytime sleepiness also reported greater HRQOL impairment than survivors with fewer symptoms. 8 These studies emphasize the effect of individual symptoms on HRQOL rather than the effect of combined symptoms as a whole, leading to underestimating the overall impact of symptoms and limiting our ability to compare the relative contribution of individual symptom to HRQOL.…”

Section: Journal Of Clinical Oncology O R I G I N a L R E P O R T V Omentioning

confidence: 99%

“…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.…”

Section: Symptoms and Quality Of Life In Adult Survivors Of Childhoodmentioning

confidence: 99%

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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

Huang

Brinkman

Kenzik

et al. 2013

JCO

109

106

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Purpose We investigated the association between prevalence of symptoms and health-related quality of life (HRQOL) in adult survivors of childhood cancer enrolled in the St Jude Lifetime Cohort study. Methods Eligibility criteria include childhood malignancy treated at St Jude, survival ≥ 10 years from diagnosis, and current age ≥ 18 years. Study participants were 1,667 survivors (response rate = 65%). Symptoms were self-reported by using a comprehensive health questionnaire and categorized into 12 classes: cardiac; pulmonary; motor/movement; pain in head; pain in back/neck; pain involving sites other than head, neck, and back; sensation abnormalities; disfigurement; learning/memory; anxiety; depression; and somatization. HRQOL was measured by using physical/mental component summary (PCS/MCS) and six domain scores of the Medical Outcomes Study 36-Item Short-Form Health Survey. Multivariable regression analysis was performed to investigate associations between symptom classes and HRQOL. Cumulative prevalence of symptom classes in relation to time from diagnosis was estimated. Results Pain involving sites other than head, neck and back, and disfigurement represented the most frequent symptom classes, endorsed by 58.7% and 56.3% of survivors, respectively. Approximately 87% of survivors reported multiple symptom classes. Greater symptom prevalence was associated with poorer HRQOL. In multivariable analysis, symptom classes explained up to 60% of the variance in PCS and 56% of the variance in MCS; demographic and clinical variables explained up to 15% of the variance in PCS and 10% of the variance in MCS. Longer time since diagnosis was associated with higher cumulative prevalence in all symptom classes. Conclusion A large proportion of survivors suffered from many symptom classes, which was associated with HRQOL impairment.

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“…Among ACC-survivors from the CCSS, 10%-23% reported moderate to extreme pain (Hudson et al, 2003; Lu, Tsao, Leisenring, Robison, & Zeltzer, 2007);16%-40% significant fatigue (Hudson et al, 2003; Mulrooney et al, 2003; Mulrooney et al, 2008); 12%-16% problems sleeping (Mulrooney et al, 2003; Mulrooney et al, 2008); 5%-17% psychological distress (i.e., anxiety, depression, somatic distress) (Zeltzer et al, 2009); and 14% difficulty concentrating (Ness et al, 2008). In a previous study, we generated a preliminary model to characterize subgroups of ACC-survivors with high-risk symptom cluster profiles (Finnegan et al, 2009). Using data from over 7000 CCSS participants, we are now refining and testing this model in the Symptom Cluster Experience Profile study.…”

mentioning

confidence: 99%

The Symptom Cluster Experience Profile Framework

Finnegan¹,

Shaver²,

Zenk³

et al. 2010

Oncology Nursing Forum

Self Cite

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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.

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Symptom Cluster Experience Profiles in Adult Survivors of Childhood Cancers

Cited by 31 publications

References 54 publications

Psychosocial Late Effects in Pediatric Cancer Survivors: A Report From the Children's Oncology Group

Psychosocial Late Effects in Pediatric Cancer Survivors: A Report From the Children's Oncology Group

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

The Symptom Cluster Experience Profile Framework

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