Impact of a novel nurse-led prechemotherapy education intervention (ChemoEd) on patient distress, symptom burden, and treatment-related information and support needs : results from a randomised, controlled trial

Background: High levels of distress and need for self-care information by patients commencing chemotherapy suggest that current prechemotherapy education is suboptimal. We conducted a randomised, controlled trial of a prechemotherapy education intervention (ChemoEd) to assess impact on patient distress, treatment-related concerns, and the prevalence and severity of and bother caused by six chemotherapy side-effects. Patients and methods: One hundred and ninety-two breast, gastrointestinal, and haematologic cancer patients were recruited before the trial closing prematurely (original target 352). ChemoEd patients received a DVD, question-prompt list, self-care information, an education consultation ≥24 h before first treatment (intervention 1), telephone follow-up 48 h after first treatment (intervention 2), and a face-to-face review immediately before second treatment (intervention 3). Patient outcomes were measured at baseline (T1: pre-education) and immediately preceding treatment cycles 1 (T2) and 3 (T3). Results: ChemoEd did not significantly reduce patient distress. However, a significant decrease in sensory/psychological (P = 0.027) and procedural (P = 0.03) concerns, as well as prevalence and severity of and bother due to vomiting (all P = 0.001), were observed at T3. In addition, subgroup analysis of patients with elevated distress at T1 indicated a significant decrease (P = 0.035) at T2 but not at T3 (P = 0.055) in ChemoEd patients. Conclusions: ChemoEd holds promise to improve patient treatment-related concerns and some physical/psychological outcomes; however, further research is required on more diverse patient populations to ensure generalisability.

Symptom burden in chronic kidney disease : a review of recent literature

Background: People living with chronic kidney disease (CKD) experience multiple symptoms due to both the disease and its treatment, these symptoms are often under recognized. The majority of studies have focused on an individual symptom; however these symptoms rarely occur in isolation and may instead occur in clusters. Aim of review: This review investigated the total symptom burden in advanced CKD (stages 4 and 5) and identified the key instruments that are used to assess multiple symptoms. Methods: A literature search from 2006 to 2012 was undertaken and a total of 19 articles were included. Result: The most common CKD symptoms were fatigue or lack of energy, feeling drowsy, pain and pruritus. However, symptom assessment instruments varied between studies, often with inconsistent or inadequate symptom dimensions. Conclusion: People with CKD experience a high burden of symptom, although little is known about the burden for people with CKD stage 4 and for those with CKD stage 5 receiving PD. This review recommends that a full range of symptoms be assessed for those at different stages of CKD. Improved understanding of the burden of symptoms could be used as the basis for treatment choices and for identifying priorities which are likely to contribute to a better quality of life and improve the quality of care.

How does symptom burden differ in people with advanced CKD who are non-dialysis or currently receiving dialysis?

Background Chronic kidney disease (CKD) leads to a range of symptoms which are often under-recognised. Little is known about the full range of symptoms, particularly in who are pre-dialysis. Understanding symptom prevalence, distress, severity and frequency will help prioritise symptom management. Aims To examine symptom burden in advanced CKD (stages 4 and 5) and compare the symptom experience between those receiving dialysis or those who are pre-dialysis. Methods Using a cross-sectional design, a convenience sample of 436 people from three hospitals completed the Modified Dialysis Symptom Index (MDSI). Demographic and renal history data was also collected. Based on the 32 symptoms, we compared the prevalence, severity, distress and frequency of each symptom by treatment modality. Results Mean age was 48 years (range 18-87 years) and 53% were male. 75.5% (haemodialysis = 287; peritoneal dialysis = 42) were receiving dialysis and 24.5% (n = 107) were pre-dialysis. Overall, the mean symptom prevalence was 12.6 ± 7.9 and the most prevalent symptoms were fatigue (77%), bone or joint pain (60.3%) and itching (59.6%) across all CKD groups. The distress, severity and frequency of the symptoms were higher in the dialysis group. However, a higher frequency of psychological symptoms (worrying, feeling nervous and depression) were reported in the pre-dialysis group. Implication for clinical practice Patients with advanced CKD have a high symptom burden with those who are pre-dialysis needing greater psychological support. The MDSI could be used in nursing practice to screen patients for symptoms which could lead to timely and appropriate interventions.

Which patients with chronic kidney disease have the greatest symptom burden? A comparative study of advanced CKD stage and dialysis modality

Background Chronic kidney disease (CKD) leads to a range of symptoms, which are often under-recognised and little is known about the multidimensional symptom experience in advanced CKD. Objectives To examine (1) symptom burden at CKD stages 4 and 5, and dialysis modalities, and (2) demographic and renal history correlates of symptom burden. Methods Using a cross-sectional design, a convenience sample of 436 people with CKD was recruited from three hospitals. The CKD Symptom Burden Index (CKD-SBI) was used to measure the prevalence, severity, distress and frequency of 32 symptoms. Demographic and renal history data were also collected. Results Of the sample, 75.5 % were receiving dialysis (haemodialysis, n = 287; peritoneal dialysis, n = 42) and 24.5 % were not undergoing dialysis (stage 4, n = 69; stage 5, n = 38). Participants reported an average of 13.01 ± 7.67 symptoms. Fatigue and pain were common and burdensome across all symptom dimensions. While approximately one-third experienced sexual symptoms, when reported these symptoms were frequent, severe and distressing. Haemodialysis, older age and being female were independently associated with greater symptom burden. Conclusions In CKD, symptom burden is better understood when capturing the multidimensional aspects of a range of physical and psychological symptoms. Fatigue, pain and sexual dysfunction are key contributors to symptom burden, and these symptoms are often under-recognised and warrant routine assessment. The CKD-SBI offers a valuable tool for renal clinicians to assess symptom burden, leading to the commencement of timely and appropriate interventions.

Symptom burden in individuals with inflammatory bowel disease: a mixed methods study

To investigate the symptom burden experiences of individuals with inflammatory bowel disease (IBD). An explanatory sequential mixed methods study was conducted. A cross-sectional, correlational survey was first undertaken. Symptom burden was measured using a modified disease specific version of the Memorial Symptom Assessment Scale, which was administered to a consecutive sample of individuals with IBD (n = 247) at an IBD Outpatients department in one urban teaching hospital in Ireland. Disease activity was determined using clinical disease activity indices, which were completed by the consulting physician. A sequential qualitative, descriptive study was then conducted aimed at explaining noteworthy quantitative findings. A criterion-related purposeful sample of seven participants from the quantitative study was recruited. Semi-structured face to face interviews were conducted using an interview guide and data were analysed using content analysis. Findings revealed that participants experienced a median of 10 symptoms during the last week, however as many as 16 symptoms were experienced during active disease. The most burdensome symptoms were lack of energy, bowel urgency, diarrhoea, feeling bloated, flatulence and worry. Total symptom burden was found to be low with a mean score of 0.56 identified out of a possible range from 0 to 4. Participants with active disease (M = 0.81, SD = 0.48; n = 68) had almost double mean total symptom burden scores than participants with inactive disease (M = 0.46, SD = 0.43; n = 166) (p < 0.001). Mean total psychological symptom burden was found to be significantly greater than mean total physical symptom burden (rho = 0.73, n = 247, p < 0.001). Self-reported disease control, gender, number of flare ups in the last two years, and smoking status was found to be significant predictors of total symptom burden, with self-reported disease control identified as the strongest predictor. Qualitative data revealed tiredness, pain, bowel symptoms, worry and fear as being burdensome. Furthermore, symptom burden experiences were described in terms of its impact on restricting aspects of daily activities, which accumulated into restrictions on general life events. Psychological symptom burden was revealed as more problematic than physical symptom burden due to its constant nature, with physical and psychological symptoms described to occur in a cyclical manner. Participants revealed that disease control was evaluated not only in terms of symptoms, but also in terms of their abilities to control the impact of symptoms on their lives. This study highlights the considerable number of symptoms and the most burdensome symptoms experienced by individuals with IBD, both during active and inactive disease. This study has important implications on symptom assessment in terms of the need to encompass both physical and psychological symptoms. In addition, greater attention needs to be placed on psychological aspects of IBD care.

Myeloproliferative neoplasm patient symptom burden and quality of life: evidence of significant impairment compared to controls

The myeloproliferative neoplasms (MPN) including polycythaemia vera (PV), essential thrombocythaemia and primary myelofibrosis (PMF) are rare diseases contributing to significant morbidity. Symptom management is a prime treatment objective but current symptom assessment tools have not been validated compared to the general population. The MPN-symptom assessment form (MPN-SAF), a reliable and validated clinical tool to assess MPN symptom burden, was administered to MPN patients (n = 106) and, for the first time, population controls (n = 124) as part of a UK case–control study. Mean symptom scores were compared between patients and controls adjusting for potential confounders. Mean patient scores were compared to data collected by the Mayo Clinic, USA on 1,446 international MPN patients to determine patient group representativeness. MPN patients had significantly higher mean scores than controls for 25 of the 26 symptoms measured (P < 0.05); fatigue was the most common symptom (92.4% and 78.1%, respectively). Female MPN patients suffered worse symptom burden than male patients (P < 0.001) and substantially worse burden than female controls (P < 0.001). Compared to the Mayo clinic patients, MPN-UK patients reported similar symptom burden but lower satiety (P = 0.046). Patients with PMF reported the worst symptom burden (88.3%); significantly higher than PV patients (P < 0.001). For the first time we report quality of life was worse in MPN-UK patients compared with controls (P < 0.001).

Factors affecting the symptom burden in chronic heart failure

Background. Heart failure (HF) is a health problem of epidemic proportions and a clinical syndrome that leads to progressively severe symptoms, which contribute significantly to the burden of the disease. Several factors may affect the symptom burden of patients with HF, including physiological, psychological, and spiritual factors. This study was designed to examine the inter-relationship of physiological, psychological, and spiritual factors affecting symptoms for patients with HF. ^ Objectives. The aims of this study were to examine symptom burden of heart failure patients related to: (1) the physiological factor of brain natriuretic peptide (BNP); (2) the psychological factor of depression; (3) the spiritual factors of self transcendence and purpose in life; and (4) combined effects of physiological, psychological and spiritual factors. One additional aim was to describe symptom intensity related to symptom burden. ^ Methods. A cross-sectional non-experimental correlational design was used to examine factors affecting symptom burden in 105 patients with HF from a southwestern medical center outpatient heart failure clinic. Both men and women were included; average age was 56.6 (SD = 16.86). All measures except BNP were obtained by patient self-report. ^ Results. The mean number of symptoms present was 8.17 (SD = 3.34) with the three most common symptoms being shortness of breath on exertion, fatigue, and weakness. The mean symptom intensity was 365.66 (SD = 199.50) on a summative scale of visual analogue reports for 13 symptoms. The mean BNP level was 292.64 pg/ml (SD = 57 1.11). The prevalence rate for depression was 43.6% with a mean score of 3.48 (SD = 2.75) on the Center for Epidemiological Studies - Depression scale (CES-D 10) scale. In a multivariate analysis, depression was the only significant predictor of symptom burden (r = .474; P < .001), accounting for 18% of the variance. Spirituality had an interaction effect with depression (P ≤ .001), serving as a moderator between depression and symptom burden. ^ Conclusion. HF is a chronic and progressive syndrome characterized by severe symptoms, hospitalizations and disability. Depression is significantly related to symptom burden and this relationship is moderated by spirituality. ^

Symptom burden and its relationship to functional performance in patients with chronic obstructive pulmonary disease

The aim of this study was to explore symptom burden and its relationship to functional performance in patients with COPD. A descriptive, cross-sectional, correlational survey design was used and a sample of 214 patients with COPD. The sample was recruited from patients attending one of the major teaching hospitals in Dublin. Symptom burden was measured using the Memorial Symptom Assessment Scale (MSAS), and the functional performance was measured using the Functional Performance Inventory-Short Form (FPISF). Findings revealed that participants experienced a median of 13 symptoms. The most burdensome symptoms were shortness of breath, lack of energy, difficulty sleeping, worrying, dry mouth, feeling nervous, feeling irritable, and feeling sad. Participants with very severe COPD had the greatest symptom burden, followed by those with severe COPD, moderate COPD, and mild COPD. Symptom burden was higher for the psychological symptoms compared to the physical symptoms. Participants with mild COPD had the highest functional performance, followed by those with moderate COPD, very severe COPD, and severe COPD. Twenty symptoms were negatively correlated with overall functional performance, indicating that high symptom burden for those symptoms was associated with low overall functional performance. Moderate, negative, statistically significant correlations were found between the total symptom burden and overall functional performance, physical symptom burden and overall functional performance and psychological symptom burden and overall functional performance. A negative linear relationship was found between total symptom burden and overall functional performance among all stages of COPD except the mild group. No relationship was found between total symptom burden and overall functional performance for the moderate group. Healthcare professionals need to broaden the clinical and research assessment of physical and psychological symptoms in COPD; alleviating the burden of these symptoms may promote improved functional performance.

Latent class analysis reveals distinct subgroups of patients based on symptom occurrence and demographic and clinical characteristics

Context Cancer patients experience a broad range of physical and psychological symptoms as a result of their disease and its treatment. On average, these patients report ten unrelieved and co-occurring symptoms. Objectives To determine if subgroups of oncology outpatients receiving active treatment (n=582) could be identified based on their distinct experience with thirteen commonly occurring symptoms; to determine whether these subgroups differed on select demographic, and clinical characteristics; and to determine if these subgroups differed on quality of life (QOL) outcomes. Methods Demographic, clinical, and symptom data from one Australian and two U.S. studies were combined. Latent class analysis (LCA) was used to identify patient subgroups with distinct symptom experiences based on self-report data on symptom occurrence using the Memorial Symptom Assessment Scale (MSAS). Results Four distinct latent classes were identified (i.e., All Low (28.0%), Moderate Physical and Lower Psych (26.3%), Moderate Physical and Higher Psych (25.4%), All High (20.3%)). Age, gender, education, cancer diagnosis, and presence of metastatic disease differentiated among the latent classes. Patients in the All High class had the worst QOL scores. Conclusion Findings from this study confirm the large amount of interindividual variability in the symptom experience of oncology patients. The identification of demographic and clinical characteristics that place patients are risk for a higher symptom burden can be used to guide more aggressive and individualized symptom management interventions.

Arabic translation, adaptation and modification of the dialysis symptom index for chronic kidney disease stages four and five

Background Symptom burden in chronic kidney disease (CKD) is poorly understood. To date, the majority of research focuses on single symptoms and there is a lack of suitable multidimensional symptom measures. The purpose of this study was to modify, translate, cross-culturally adapt and psychometrically analyse the Dialysis Symptom Index (DSI). Methods The study methods involved four phases: modification, translation, pilot-testing with a bilingual non-CKD sample and then psychometric testing with the target population. Content validity was assessed using an expert panel. Inter-rater agreement, test-retest reliability and Cronbach’s alpha coefficient were calculated to demonstrate reliability of the modified DSI. Discriminative and convergent validity were assessed to demonstrate construct validity. Results Content validity index during translation was 0.98. In the pilot study with 25 bilingual students a moderate to perfect agreement (Kappa statistic = 0.60-1.00) was found between English and Arabic versions of the modified DSI. The main study recruited 433 patients CKD with stages 4 and 5. The modified DSI was able to discriminate between non-dialysis and dialysis groups (p < 0.001) and demonstrated convergent validity with domains of the Kidney Disease Quality of Life short form. Excellent test-retest and internal consistency (Cronbach’s α = 0.91) reliability were also demonstrated. Conclusion The Arabic version of the modified DSI demonstrated good psychometric properties, measures the multidimensional nature of symptoms and can be used to assess symptom burden at different stages of CKD. The modified instrument, renamed the CKD Symptom Burden Index (CKD-SBI), should encourage greater clinical and research attention to symptom burden in CKD.

Differences in composition of symptom clusters between older and younger oncology patients

Context Older oncology patients have unique needs associated with the many physical, psychological,and social changes associated with the aging process. The mechanisms underpinning and the impact of these changes are not well understood. Identification of clusters of symptoms is one approach that has been used to elicit hypotheses about the biological and/or psychological basis for variations in symptom experiences. Objectives The purposes of this study were to identify and compare symptom clusters in younger (<60 years) and older ($60 years) patients undergoing cancer treatment. Methods. Symptom data from one Australian study and two U.S. studies were combined to conduct this analysis. A total of 593 patients receiving active treatment were dichotomized into younger (<60 years) and older ($60 years) groups. Separate exploratory factor analyses (EFAs) were undertaken within each group to identify symptom clusters from occurrence ratings of the 32 symptoms assessed by the Memorial Symptom Assessment Scale. Results In both groups, a seven-factor solution was selected. Four partially concordant symptom clusters emerged in both groups (i.e., mood/cognitive, malaise, body image, and genitourinary). In the older patients, the three unique clusters reflected physiological changes associated with aging, whereas in the younger group the three unique clusters reflected treatment-related effects. Conclusion The symptom clusters identified in older patients typically included a larger and more diverse range of physical and psychological symptoms. Differences also may be reflective of variations in treatment approaches between age groups. Findings highlight the need for better understanding of variation in treatment and symptom burden between younger and older adults with cancer.

Patient participation in symptom management in an acute oncology setting

Cancer and cancer treatments are associated with high symptom burden. Effective, safe and quality symptom management requires patient participation in symptom identification and treatment. This mixed methods, in depth investigation of symptom management practices uncovered patient, clinician and symptom factors that play a role in patients’ ability and willingness to participate.

Measuring the multidimensions of symptoms in people with advanced stages of chronic kidney disease

Chronic kidney disease (CKD) is increasing globally and in Saudi Arabia it affects approximately 8% annual increment of dialysis population. It is associated with a high symptom burden. Previous studies have largely reported on the prevalence of symptoms only in the haemodialysis population. This study examined symptom burden across disease stages and treatment groups in advanced CKD, and their correlation with demographic and clinical factors. Using a cross-sectional design, a convenience sample of 436 patients with CKD was recruited from three hospitals in Saudi Arabia. The CKD Symptom Burden Index (CKD-SBI) was used to measure 32 CKD symptoms. Demographic and clinical data were also collected. Of the sample 75.5% were receiving dialysis (haemodialysis, n = 287; peritoneal dialysis, n = 42) and 24.5% were non-dialysis (CKD stage 4, n = 69; CKD stage 5, n = 38). Average symptom reported was 13.01 ± 7.67. Fatigue and pain were common and burdensome across all symptom dimensions.Approximately one-third of participants experienced sexual symptoms. Dialysis patients reported greater symptom burden, especially patients on haemodialysis. Haemodialysis treatment, older age and being female were independently associated with greater total symptom burden. In conclusion, symptom burden is high among advanced stages of CKD, particularly among those receiving dialysis. Although fatigue, pain and sexual dysfunction are key contributors to symptom burden in CKD, these symptoms are often under-recognised and warrant routine assessment. The CKD-SBI offers a valuable tool to assess symptom burden, leading to the commencement of timely and appropriate interventions.

Cancer associated malnutrition: prevalence of cachexia, sarcopenia and impact on treatment outcomes, survival and health related quality of life

Malnutrition, sarcopenia and cancer cachexia (CC) are prevalent among cancer patients and can have detrimental effects on clinical outcomes such as quality of life (QoL) and overall survival. Cachexia is associated with lower tolerance for chemotherapy, which limits the total dose that can be delivered, the number of symptomatic responses and any survival advantage that might be accrued. Moreover, for the majority who do not respond, cachexia may be exacerbated by systemic chemotherapy, thus increasing the net symptom burden experienced by patients. The multitude of interactions between cancer location, treatments, nutritional status and QoL has never been thoroughly explored in an Irish cancer cohort. The objectives of this thesis were to further understand nutritional status, especially body composition in ambulatory cancer patients and determine the relationship between nutritional status using different assessment criteria and QoL, chemotherapy toxicity and survival among cancer patients undergoing chemotherapy. Results aimed to identify baseline factors that may be predictive of poor outcome, toxicities to chemotherapy and disease-free and overall survival. This thesis broadly divides into two sections. The first section (Chapters 3 & 4) focuses on improving our knowledge of the nutritional status of Irish cancer outpatients using a cross sectional study design. A study of 517 patients referred for chemotherapy was conducted using computed tomography (CT) imaging (body composition) and a survey that documented oncologic data, weight loss (WL) data and QoL data. We revealed that a significant proportion of Irish cancer patients undergoing chemotherapy experience unintentional WL over the previous 6 months (62%), sarcopenia (45%) and CC (43%), and the distribution of WL and nutritional risk were associated with site of primary tumour and treatment intent. Patients that had sarcopenia, nutritional risk, or CC had significantly reduced functional abilities, more symptoms and adverse global QoL. In the second section of this thesis (Chapters 5 & 6) the potential link between developing toxicity to antineoplastic regimens in patients with sarcopenia was conducted by way of retrospective studies. A retrospective serial CT analysis defined the prevalence of sarcopenia in patients with metastatic renal cell carcinoma (mRCC) and metastatic castrate resistant prostate cancer (mCRPC), which was then correlated with dose limiting toxicities of sunitinib and docetaxel respectively. Sarcopenia was prevalent in patients with mRCC and mCRPC, was an occult condition in patients with normal/high BMI, was associated with less treatment days, was a significant predictor of DLT in patients receiving sunitinib and a significant predictor of neutropenia and neurosensory toxicities in patients receiving docetaxel. This thesis attempted to address the underlying research deficiencies in Irish oncology nutritional data at national level. The findings from this thesis have implications for the planning of cancer care interventions and indicate that further research is required to improve nutritional screening, in particular for CC and sarcopenia, in the hope that timely intervention can improve both patient-centered and oncologic outcomes.