An evaluation of the factors that affect the health-related quality of life of children following myelosuppressive chemotherapy

PurposeThe 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.MethodsPatients (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.ResultsThe 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.ConclusionAmong 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

Investigation of two treatment regimens in adults with mild asthma

Introduction In adults with mild-moderate asthma, poor adherence to daily maintenance inhaled corticosteroids (ICS) leads to increased asthma symptoms and risk of asthma exacerbations. There is evidence that symptom-driven use of a combination ICS plus a fast-onset long-acting beta2-agonist (LABA) inhaler taken as needed may be an alternative to daily maintenance ICS plus as-needed short-acting beta2-agonists (SABA). Through four studies: The PRACTICAL study (a randomised controlled trial) and three sub-studies nested within it, this thesis aims to investigate the efficacy of as-needed ICS-formoterol (a fast-onset LABA), exposure to and patterns of ICS and beta2-agonist use, and patient preferences for and priorities concerning their asthma management. Methods The PRACTICAL study was a 52 week, open label, parallel group, multicentre, superiority, randomised controlled trial conducted at 15 sites throughout New Zealand. Adults aged 18-75 with a diagnosis of asthma who were taking SABA for symptom relief with or without low dose maintenance ICS were recruited. Participants were randomised 1:1 to either as-needed budesonide-formoterol (200/6mcg) one actuation for symptom relief or budesonide (200mcg) one actuation twice a day plus as-needed terbutaline (250mcg) two actuations for symptom relief. A sub-group of 110 participants had electronic inhaler monitors attached to their study inhalers which captured the time and date of every inhaler actuation. At their final study visit a total of 407 participants were eligible to complete a survey on their treatment preferences and experiences of their study randomised treatment, and a discrete choice experiment to determine their priorities for attributes of asthma management including; treatment regimen, shortness of breath, steroid dose and likelihood of an asthma flare-up. Results The PRACTICAL study found the rate of severe exacerbations per patient per year was lower in participants randomised to as-needed budesonide-formoterol than participants randomised to maintenance budesonide (absolute rate per patient per year 0.119 vs 0.172; relative rate 0.69; 95%CI 0.48-1.00; p=0.049). Within the electronic monitoring sub-study, exposure to ICS was significantly lower in the group randomised to as-needed budesonide-formoterol with a mean daily ICS dose of 176.0mcg versus 302.5mcg in those randomised to maintenance budesonide (difference -126.5mcg per day; 95%CI -171.0 to -81.9; p<0.001). Use of as-needed budesonide-formoterol was associated with extended periods of no ICS use (median 156 days vs 22 days respectively) and more days where ≥4, 6 or 8 actuations of ICS were taken than maintenance budesonide. Participants’ preference for either as-needed or maintenance treatment was strongly associated with randomised treatment; 90% randomised to as-needed budesonideformoterol preferred their randomised treatment compared to 60% of those randomised to maintenance budesonide, odds ratio for association between randomised treatment and preference was 13.3 (95%CI 7.1 to 24.7; p<0.001). The DCE found that amount of shortness of breath was the most important attribute of asthma treatment to all participants. However, the relative importance of other attributes, particularly type of treatment regimen, varied depending on whether the participants had previously stated a preference for as-needed or maintenance treatment. Discussion In adults with mild-moderate asthma, as-needed budesonide-formoterol is more effective at preventing severe asthma exacerbations than maintenance budesonide at a significantly lower exposure to ICS, despite long periods of no ICS use. This suggests that timing of ICS dose and titrating it in response to symptoms is more important than total dose. If participants have experienced as-needed budesonide-formoterol, they prefer it over maintenance budesonide suggesting this new approach to asthma treatment will be acceptable to patients. Control of shortness of breath was the most important attribute of asthma treatment to all patients. However, participants who preferred as-needed treatment were more willing to trade-off likelihood of an asthma flare up and steroid dose for their preferred treatment regimen. Knowledge of patient preferences and priorities for treatment, together with knowledge of regimen characteristics can be used in discussion with patients to determine the most appropriate regimen for them

Children's Perspectives on Symptoms and Health Related Quality of Life During Cancer Chemotherapy

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

Children's perspectives on symptoms and health related quality of life during cancer chemotherapy

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

Children's Perspectives on Symptoms and Health Related Quality of Life During Cancer Chemotherapy

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

Do You Know My Child? Continuity of Nursing Care in the Pediatric Intensive Care Unit.

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 CCC 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