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Open Access Publications from the University of California

Scholarly Works (35 results)

  • Thesis
  • Peer Reviewed
UC San Francisco Electronic Theses and Dissertations (2009)

Children with cancer experience a myriad of disease or treatment related symptoms. Little is known about the multiple dimensions of these symptoms, how these dimensions change during treatment, and the relationship between symptoms and health related quality of life (HRQOL).

The purposes of this study, in a sample of children who underwent myelosuppressive chemotherapy were to: describe changes in symptom occurrence and severity during a course of chemotherapy. In addition, these children's scores on a generic measure of HRQOL were compared to a normative sample of healthy children and relationships between demographic, clinical, and symptom characteristics and generic and disease-specific dimensions of HRQOL were examined in the children with cancer.

Children completed the Memorial Symptom Assessment Scale (MSAS), the PedsQL Generic and Cancer Modules, and the Karnofsky Performance Status (KPS) at the start of chemotherapy (T1) and weekly for the next two weeks (T2 and T3). Patients (n=66), were predominantly male (51.5%), minority (62.1%), and 14.9 years of age.

The mean number of symptoms per patient was 10.6 at T1, 10.7 at T2, and 8.4 at T3. Using multilevel logistic regression, fatigue, sadness, irritability, worrying, weight loss, and sweating showed a decreasing linear trend. Significant quadratic patterns of change were found for feeling drowsy, nausea, and vomiting. Using multilevel negative binomial regression, no significant differences, over time were found in any of the MSAS symptom severity scores.

Compared to the normative sample, children with cancer reported significantly lower total and subscale scores except for emotional and social functioning. No significant differences were found between any demographic characteristics and any total or subscale scores on the generic or disease specific measures of HRQOL. Lower KPS scores were associated with poorer generic and disease specific HRQOL scores. A higher number of symptoms and higher symptom distress scores were associated with poorer generic and disease specific HRQOL scores.

Children experienced a high number of symptoms at the initiation of a chemotherapy cycle that persisted over the subsequent two weeks. Among the demographic, clinical, and symptom characteristics studied, poorer functional status and higher symptom burden were associated with significant decreases in HRQOL.

    Cover page: Children's Perspectives on Symptoms and Health Related Quality of Life During Cancer Chemotherapy
    • Article
    • Peer Reviewed
    UC San Francisco Previously Published Works (2015)
    Patient and family-centered care (PFCC) is the foundation for pediatric healthcare. The existence of hospital rules can, however, impact the extent to which PFCC is delivered. This qualitative, grounded theory study identified the existence of explicit and implicit rules in a pediatric intensive care unit, all of which negatively affected the family's ability to receive care that was attentive to their needs. The rules also placed the registered nurse in the challenging position of serving as rule enforcer and facilitator of PFCC. Further work is needed to explore how to adapt the hospital environment to better meet families' needs.
      Cover page: What Impact Do Hospital and Unit-Based Rules Have Upon Patient and Family-Centered Care in the Pediatric Intensive Care Unit?
      • Article
      • Peer Reviewed
      UC San Francisco Previously Published Works (2011)

      Purpose

      The purposes of this study, in children who were assessed 1 week after the administration of myelosuppressive chemotherapy were: to compare the total and subscale scores on a generic measure of health-related quality of life (HRQOL) to normative data from healthy children and describe the relationships between demographic, clinical, and symptom characteristics of children with cancer and generic and disease-specific dimensions of HRQOL.

      Methods

      Patients (n = 61) were predominantly male (52.5%), minority (63.9%), and 14.7 years of age. Children completed the Memorial Symptom Assessment Scale for 10- to 18-year olds, the PedsQL™ Generic and Cancer Modules, and the Karnofsky Performance Status (KPS) scale 1 week after the start of a chemotherapy cycle.

      Results

      The mean number of symptoms per patient was 10.6. Compared with the normative sample, children with cancer reported significantly lower scores for the total scale and all of the subscales except emotional and social functioning. No significant differences were found between any demographic characteristics and total or subscale scores on the generic or disease-specific measures of HRQOL. Lower KPS scores were associated with poorer generic and disease-specific HRQOL scores. In addition, a higher number of symptoms was associated with poorer generic and disease-specific HRQOL scores. Finally, higher symptom distress scores were associated with poorer generic and disease-specific HRQOL scores.

      Conclusion

      Among the demographic, clinical, and symptom characteristics studied, poorer functional status and higher symptom burden were associated with significant decreases in HRQOL in children who received myelosuppressive chemotherapy.
        Cover page: An evaluation of the factors that affect the health-related quality of life of children following myelosuppressive chemotherapy.
        • Article
        • Peer Reviewed
        UC San Francisco Previously Published Works (2016)

        Background

        Parents of children with complex, chronic conditions report a desire for continuity of care, but relatively little is known about the ways in which nursing continuity of care occurs and the extent to which it is delivered in the inpatient setting.

        Objectives

        The objective of this analysis, which arose from a study on best practices in parent/nurse interactions in the pediatric intensive care unit (PICU), was to explore the delivery of continuity of nursing care in the PICU from the perspective of both parents and nurses.

        Methods

        A qualitative, grounded theory study using situational analysis was conducted with seven parents and 12 nurse participants from a single PICU. Data sources included in-depth interviews, observation, and organizational written materials. Data were coded and analyzed using memoing and situational and positional maps to highlight emerging themes, context, and positions within the data.

        Results

        Parents repeatedly endorsed a desire for continuity of nursing care, wanting to ensure that the bedside nurse valued their child as an individual and understood the complexities of the child's care regimen. Nurses understood this need but faced both contextual and personal challenges to achieving continuity, including fluctuations in staffing needs, training demands, fear of emotional entanglement, and concern for missed learning opportunities.

        Discussion

        Continuity of nursing care is highly valued by parents of children with complex chronic condition in the PICU, but significant barriers to optimal delivery exist within the current critical care environment. Mechanisms for supporting nurses to deliver continuity of care are needed, as are alternative ways to help parents feel that all nurses caring for their child have the knowledge necessary to deliver safe and compassionate care.
          Cover page: Do You Know My Child? Continuity of Nursing Care in the Pediatric Intensive Care Unit
          • Article
          • Peer Reviewed
          UC San Francisco Previously Published Works (2013)
          Objectives were to describe the reliability and validity of a new paediatric-specific mucositis scale, the Children's International Mucositis Evaluation Scale (ChIMES).In a multi-centre prospective study, children aged 0 to ≤18 years were eligible if they
            • Article
            • Peer Reviewed
            UC San Francisco Previously Published Works (2014)
            BACKGROUND: Objective was to evaluate and refine a new instrument for paediatric cancer symptom screening named the Symptom Screening in Pediatrics Tool (SSPedi). METHODS: Respondents were children 8-18 years of age undergoing active cancer treatment and p
              • Article
              • Peer Reviewed
              UC San Francisco Previously Published Works (2014)
              Subgroups of individuals may be at greater risk of cytokine-induced changes in attentional function. The purposes of this study were to identify subgroups of individuals with distinct trajectories of attentional function and evaluate for phenotypic and genotypic (i.e., cytokine gene polymorphisms) differences among these subgroups. Self-reported attentional function was evaluated in 252 participants (167 oncology patients and 85 family caregivers) using the Attentional Function Index before radiation therapy and at six additional assessments over 6 months. Three latent classes of attentional function were identified using growth mixture modeling: moderate (36.5%), moderate-to-high (48.0%), and high (15.5%) attentional function. Participants in the moderate class were significantly younger, with more comorbidities and lower functional status, than those in the other two classes. However, only functional status remained significant in multivariable models. Included in the genetic association analyses were 92 single nucleotide polymorphisms (SNPs) among 15 candidate genes. Additive, dominant, and recessive genetic models were assessed for each SNP. Controlling for functional status, only Interleukin 6 (IL6) rs1800795 remained a significant genotypic predictor of class membership in multivariable models. Each additional copy of the rare G allele was associated with a 4-fold increase in the odds of belonging to the lower attentional function class (95% confidence interval: [1.78, 8.92]; p = .001). Findings provide preliminary evidence of subgroups of individuals with distinct trajectories of attentional function and of a genetic association with an IL6 promoter polymorphism.
                Cover page: Preliminary evidence of an association between an interleukin 6 promoter polymorphism and self-reported attentional function in oncology patients and their family caregivers.
                • Article
                • Peer Reviewed
                UC San Francisco Previously Published Works (2013)
                PURPOSE: Depressive symptoms are common in cancer patients and their family caregivers (FCs). While these symptoms are characterized by substantial interindividual variability, the factors that predict this variability remain largely unknown. This study sought to confirm latent classes of oncology patients and FCs with distinct depressive symptom trajectories and to examine differences in phenotypic and genotypic characteristics among these classes. METHOD: Among 167 oncology outpatients with breast, prostate, lung, or brain cancer and 85 of their FCs, growth mixture modeling (GMM) was used to identify latent classes of individuals based on Center for Epidemiological Studies-Depression (CES-D) scores obtained prior to, during, and for four months following completion of radiation therapy. One hundred four single nucleotide polymorphisms (SNPs) and haplotypes in 15 candidate cytokine genes were interrogated for differences between the two largest latent classes. Multivariate logistic regression analyses assessed effects of phenotypic and genotypic characteristics on class membership. RESULTS: Four latent classes were confirmed: Resilient (56.3%), Subsyndromal (32.5%), Delayed (5.2%), and Peak (6.0%). Participants who were younger, female, non-white, and who reported higher baseline trait and state anxiety were more likely to be in the Subsyndromal, Delayed, or Peak groups. Variation in three cytokine genes (i.e., interleukin 1 receptor 2 [IL1R2], IL10, tumor necrosis factor alpha [TNFA]), age, and performance status predicted membership in the Resilient versus Subsyndromal classes. CONCLUSIONS: Findings confirm the four latent classes of depressive symptom trajectories previously identified in a sample of breast cancer patients. Variations in cytokine genes may influence variability in depressive symptom trajectories.
                  Cover page: Cytokine gene variation is associated with depressive symptom trajectories in oncology patients and family caregivers.
                  • Article
                  • Peer Reviewed
                  UC San Francisco Previously Published Works (2013)

                  Purpose of the research

                  To identify distinct latent classes of individuals based on ratings of morning and evening fatigue; evaluate for differences in phenotypic characteristics, as well as symptom and quality of life scores, among these latent classes; and evaluate for an overlap in morning and evening fatigue class membership.

                  Patients and methods

                  In a sample of 167 oncology outpatients and 85 of their FCs, growth mixture modeling was used to identify distinct latent classes based on ratings of morning and evening fatigue obtained before, during, and after radiation therapy. Analyses of variance and Chi Square analyses were used to evaluate for differences among the morning and evening fatigue latent classes.

                  Results

                  Three distinct latent classes for morning fatigue were identified. Participants in the High Morning Fatigue class (47%) were younger and had lower functional status. Three distinct latent classes for evening fatigue were identified. Participants in the High Evening Fatigue class (61%) were younger, more likely to be female, more likely to have children at home, and more likely to be a FC. Only 10.3% of participants were classified in both the Very Low Morning and Low Evening Fatigue classes and 41.3% were classified in both the High Morning and High Evening Fatigue classes.

                  Conclusions

                  Different characteristics were associated with morning and evening fatigue, which suggests that morning and evening fatigue may be distinct but related symptoms. Additional research is needed to elucidate the mechanisms that may underlie diurnal variability in fatigue.
                    • Article
                    • Peer Reviewed
                    UC San Francisco Previously Published Works (2014)
                    Subgroups of individuals may be at greater risk of cytokine-induced changes in attentional function. The purposes of this study were to identify subgroups of individuals with distinct trajectories of attentional function and evaluate for phenotypic and genotypic (i.e., cytokine gene polymorphisms) differences among these subgroups. Self-reported attentional function was evaluated in 252 participants (167 oncology patients and 85 family caregivers) using the Attentional Function Index before radiation therapy and at six additional assessments over 6 months. Three latent classes of attentional function were identified using growth mixture modeling: moderate (36.5%), moderate-to-high (48.0%), and high (15.5%) attentional function. Participants in the moderate class were significantly younger, with more comorbidities and lower functional status, than those in the other two classes. However, only functional status remained significant in multivariable models. Included in the genetic association analyses were 92 single nucleotide polymorphisms (SNPs) among 15 candidate genes. Additive, dominant, and recessive genetic models were assessed for each SNP. Controlling for functional status, only Interleukin 6 (IL6) rs1800795 remained a significant genotypic predictor of class membership in multivariable models. Each additional copy of the rare "G" allele was associated with a 4-fold increase in the odds of belonging to the lower attentional function class (95% confidence interval: [1.78, 8.92]; p = .001). Findings provide preliminary evidence of subgroups of individuals with distinct trajectories of attentional function and of a genetic association with an IL6 promoter polymorphism.
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