Higher Levels Of Symptom Distress Research Articles

Abstract C013: Racial disparities in Interpersonal Processes of Care (IPC) during early stage breast cancer chemotherapy: Associations with symptoms and the ability to receive dose-intensive chemotherapy

Abstract Purpose: Documented racial disparities exist in the dose intensity of early-stage breast cancer (ESBC) chemotherapy, partly due to chemotherapy symptom toxicity and subsequent dose modifications. Effective communication is crucial for early symptom mitigation. We explored the associations between racial differences in patient-clinician communication, symptom experience, and the ability to receive the full dose of ESBC chemotherapy. Methods - A descriptive, correlational design compared clinician communication, symptoms, and the ability to obtain dose-intensive ESBC chemotherapy by race. Multi-site - large, urban breast cancer outpatient clinics. Patients completed the 18-item Interpersonal Processes of Care (IPC) and 13-item Symptom Distress Scale (SDS) at baseline and each chemotherapy visit. The IPC assesses clarity of communication, elicitation of concerns, explaining results, shared decision-making, compassion, discrimination due to race/ethnicity, and disrespectful office staff. Mean scores for IPC and SDS were calculated for each visit, and average scores across all visits were created for each participant; chemotherapy dose intensity - Receiving 85% or more of the prescribed chemotherapy within the projected timeline, dichotomized to yes or no—Analysis - IBM® SPSS®, version 27. Descriptive statistics were generated for raw data. Pearson’s correlations were used to examine bivariate associations and univariate and multivariate logistic or linear regression models to explore associations further. Results – N = 216 women, 37% - Black and 63% - White. The mean age was 52.99 ± 12.31 years. IPC - Black patients reported significantly higher (worse) IPC scores for "lack of clarity," "discrimination," and "disrespectful office staff" compared to White patients (all ps ≤ 0.01). Associations of SDS and IPC - Patients with higher IPC subscale scores for "lack of clarity," "discrimination," and "disrespectful office staff," and lower scores for "compassion and respect" experienced significantly higher levels of symptom distress (all ps < 0.05). Associations between IPC and Dose Intensity - Patients reporting higher (worse) discrimination scores were less likely to receive 85% of the prescribed chemotherapy. The IPC "discrimination" subdomain score was significantly associated with chemotherapy dose intensity (χ2(1)=6.910, p=0.009). Each one-unit increase in perceived "discrimination" subdomain score increased the likelihood of not receiving prescribed chemotherapy (B=0.985, OR=2.602, p=0.014) by approximately 160.2%. Conclusions - Black patients perceive poorer quality IPC than White patients during ESBC chemotherapy. Specific subdomains of IPC are associated with worse symptom distress and the inability to receive the full dose of ESBC chemotherapy, primarily driven by perceived discrimination. We must understand the relationship between race, communication, symptoms, and the ability to receive appropriate chemotherapy dose intensity. Citation Format: Margaret Q. Rosenzweig, Hiba Q. Abujaradeh. Racial disparities in Interpersonal Processes of Care (IPC) during early stage breast cancer chemotherapy: Associations with symptoms and the ability to receive dose-intensive chemotherapy [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr C013.

Predictors of Effects in Brief Psychiatric Treatment for Borderline Personality Disorder.

If evidence points to the equal efficacy of all bona fide treatments for borderline personality disorder (BPD) in general, it may not necessarily be true for a specific individual, nor do such general conclusions help in the triage of clients in clinical services. We investigated potential therapy outcome predictors for participants with a BPD diagnosis (N = 99). They were assessed on scales including the Outcome Questionnaire-45.2 (OQ-45), the Inventory of Interpersonal Problems-64, and the Borderline Symptom List. Our analyses revealed that individuals with low levels of symptom distress at intake had the smallest change in total OQ-45 score over the course of brief treatment, while the individuals with high levels of symptom distress had a mean large change in total score (-23). We observed that individuals with high symptom loads AND low levels of interpersonal problems at intake seemed to have the best progress.

Factors associated with health-related quality of life in gynaecologic cancer survivors with lower limb lymphedema: a cross-sectional study in Taiwan

BackgroundsGynaecological cancer survivors may develop lower limb lymphoedema after surgery, which negatively impacts quality of life. The purposes of this study were (1) to assess the levels of symptom distress, depression, body image, and health-related quality of life (HRQoL); (2) to recognize factors associated with HRQoL related in gynaecologic cancer survivors with lower limb lymphoedema.MethodsA cross-sectional study was conducted with convenience sampling of gynaecologic cancer survivors with lower limb lymphoedema. Gynaecologic cancer survivors were assessed for symptom distress, depression, body image, and HRQoL. Multiple regression analysis was conducted to recognize the factors associated with HRQoL. Independent-samples t-test was used to compare symptom distress, depression, body image, and HRQoL by grade of lymphoedema.ResultsThe most common distressing symptoms of lower limb lymphoedema were lower extremity oedema, lower extremity tightness, and lower extremity stiffness. Worse HRQoL was associated with more symptom distress, less satisfaction with body image, a high grade of lymphoedema, and a longer duration of lower limb lymphoedema. These factors explained 76.5% of the variance in HRQoL. Gynaecologic cancer survivors with late grade lymphoedema experienced lower HRQoL and higher levels of symptom distress, depression, and greater dissatisfaction with body image than those who had early grade lymphoedema.ConclusionsSymptom distress had the strongest association with overall HRQoL and with all individual domains of HRQoL, except mental function. These results suggest that educating gynaecologic cancer survivors to assess lower limb lymphoedema-related problems, providing symptom management, and guiding survivors in physical activity to relieve lower extremity discomfort can improve HRQoL.

Assessment of symptoms among among patients living with cancer: prevalence, distress and its correlation with quality of life.

Background: Several symptoms known to be experienced by cancer patients receiving palliative care remain under-reported, inadequately managed and unexplored in Jordan. Aim: To describe the prevalence of symptoms, the distress caused and the correlation with quality-of-life among cancer patients receiving palliative care in Jordan. Methods: A cross-sectional correlational survey design was used. The Rotterdam Symptom Checklist and the Quality-of-Life Index-Cancer version were used for data collection. Data were analysed using descriptive statistics, unpaired t-test and Pearson correlation coefficients. Results: The sample comprises of 124 patients with a mean age of 55.7 years (SD=12.9). A total of 57.3% of them were females. Patients reported having an average of 17.3 (SD=7.1) symptoms. The most reported symptoms were tiredness (90.3%), lack of energy (81.5%), sore muscles (81.5%) and worry (76.6%). The mean total score for quality of life was 17.9 (SD=5.9) out of 30. A negative (P<0.05) relationship was found between the number of concurrent symptoms and the total quality of life score. Conclusions: Palliative care patients in Jordan reported a high number of co-occurring symptoms and experienced high levels of symptom distress, which negatively impacted their quality of life. Further research to evaluate the impact of total symptom management, its efficacy and feasibility is needed.

Changes in Depression and Sleep Quality and Associated Factors in Women Receiving Chemotherapy for Ovarian Cancer: An Observational Study.

Although women with ovarian cancer experience depression and poor sleep quality, little is known about how various factors, particularly self-efficacy, might be associated with these conditions. The aim of this study was to examine the prevalence of and changes in depression and sleep quality and the factors associated with these conditions in a cohort of women with ovarian cancer before, during, and after chemotherapy. A prospective repeated-measures design was adopted in this study. Participants were women with ovarian cancer who were expected to receive 4 to 6 cycles of chemotherapy and were recruited at a medical center in Taiwan. The participants were asked to complete a questionnaire that included the Symptom Distress Scale, Center for Epidemiologic Studies Depression Scale, General Self-efficacy Scale, and Pittsburgh Sleep Quality Index. The data were collected before, during, and after the course of chemotherapy. Overall, 24.6% to 36.9% of women were at risk for depression; 75.4% to 80.0% of women had poor sleep quality. There were no significant changes in depressive symptoms and sleep quality throughout the course of chemotherapy. More severe depressive symptoms were associated with higher levels of symptom distress and lower self-efficacy. Poorer sleep quality was associated with higher levels of symptom distress. Among participants, more depressive symptoms and poorer sleep quality were associated with higher levels of symptom distress or lower self-efficacy. Healthcare providers should continuously assess depression and sleep quality in women with ovarian cancer. These symptoms may be improved by strengthening self-efficacy and relieving symptom distress.

Symptom trajectories for palliative care inpatients with and without hyperactive delirium in the last week of life.

Hyperactive delirium (HD) is a common and distressing symptom among palliative care patients. This study aimed to describe the characteristics of HD and associated symptoms among palliative care inpatients and evaluate relationships between HD development and symptom trajectories in this population. A retrospective study was conducted. A retrospective review of medical records was conducted for all patients who died in a large Australian specialist palliative care unit between 1 January and 31 December 2019. Patients were assessed daily using the Symptoms Assessment Scale (SAS) and Palliative Care Problem Severity Scale (PCPSS). Multilevel models were used to estimate the differences in symptoms trajectories in the last 7days of life between the two groups. Of the 501 included patients, 64.5% (323) had an episode of HD. For 30% (95) of patients, HD occurred prior to admission. Compared with patients without HD, those with HD had significantly higher odds ratios (ORs) for four of the seven SAS symptoms (sleep problems, appetite, fatigue and pain; OR range: 1.94-4.48, p<.05), and all four PCPSS items (OR range: 2.00-3.00, p<.05) in the last week of life. Palliative care inpatients commonly experience HD in their last week of life. There are higher levels of symptom distress, complexity, psychological concerns and family/carer concerns among patients with HD compared with those without HD. The high prevalence of HD, and its association with higher levels of symptom distress, highlights the importance of routine screening and optimal management for HD among palliative care patients. Given the widely recognized challenges facing palliative care professionals in assessment and management of delirium, provision of relevant training among these professionals is recommended.

The Relationship between Affect Integration and Psychopathology in Patients with Personality Disorder: A Cross-Sectional Study.

Background and Objectives: Emotional dysfunction is considered a key component in personality disorders; however, only few studies have examined the relationship between the two. In this study, emotional dysfunction was operationalized through the Affect Integration Inventory, and the aim was to examine the relationships between the level of affect integration and the levels of symptom distress, interpersonal problems, and personality functioning in patients diagnosed with personality disorder according to the Diagnostic and Statistical Manual of Mental Disorders, fifth edition. Materials and Methods: Within a hospital-based psychiatric outpatient setting, 87 patients with personality disorder referred for treatment were identified for assessment with the Affect Integration Inventory and other measures (e.g., the Symptom Checklist-90, Revised, the Inventory of Interpersonal Problems 64 circumplex version, and the Severity Indices of Personality Problems). Results: The analyses revealed that problems with affect integration were strongly and statistically significantly correlated with high levels of symptom distress, interpersonal problems, and maladaptive personality functioning. Additionally, low scores on the Affect Integration Inventory regarding discrete affects were associated with distinct and differentiated patterns of interpersonal problems. Conclusion: Taken together, emotional dysfunction, as measured by the Affect Integration Inventory, appeared to be a central component of the pathological self-organization associated with personality disorder. These findings have several implications for the understanding and psychotherapeutic treatment of personality pathology. Furthermore, they highlight the importance of considering the integration of discrete affects and their specific contributions in the conceptualization and treatment of emotional dysfunction in patients with personality disorders.

Moderating effect of sense of coherence on the relationship between symptom distress and health-related quality of life in patients receiving cancer chemotherapy.

This study is aimed at examining the buffering effect of sense of coherence (SOC) on symptom distress during cancer drug therapy, which thereby affects health-related quality of life (QoL), and obtaining suggestions for promoting supportive care. We investigated health-related QoL (SF-8), symptom distress (using the Symptom Distress Scale (SDS)), and SOC (the SOC 13-item Scale) in 66 patients receiving adjuvant chemotherapy for non-small cell lung cancer. We employed descriptive statistics to seek the correlation of each variable; then, a hierarchical multiple regression analysis was conducted with SF-8 score as the dependent variable. Results showed that significant changes in bodily pain showed a buffering effect on the SDS and sense of comprehensibility (β = - 0.658, p < 0.01, β = - 0.319, p < 0.05), sense of manageability (β = - 0.658, p < 0.01, β = 0.398, p < 0.01), and meaningfulness (β = - 0.658, p < 0.01, β = - 0.257, p < 0.05). Significant changes in general health perception showed a buffering effect on the SDS and sense of manageability (β = - 0.406, p < 0.01, β = 0.329, p < 0.05). As a result of the simple inclination test, SOC proved to be effective under high levels of symptom distress; the buffering effect of sense of manageability was reversed regarding bodily pain; and when meaningfulness was lower, it had a positive effect on QoL. This study revealed that SOC exerts a buffering effect in situations where symptoms are highly painful. It also revealed that the effect of SOC was reversed for bodily pain and that a high SOC had a negative effect on QoL.

Follow-up study on symptom distress in esophageal cancer patients undergoing repeated dilation.

BACKGROUNDRepeated endoscopic probe dilatation is the most preferred treatment for esophageal stenosis which may cause high levels of symptom distress in the patient's home rehabilitation stage.AIMTo explore the changes in the symptom distress level and its correlation with the dilation effect in patients with esophageal carcinoma undergoing repeated dilations for lumen stenosis.METHODSThe difference (R2-R1) between the diameter of the esophageal stenosis opening (R1) of the patients before dilation (R1) and after dilation (R2) was calculated to describe the extent and expansion of the esophageal stenosis before and after dilation. The M.D. Anderson Symptom Inventory was used to describe the symptom distress level of patients with dilation intermittence during their stay at home and to explore the correlation between the dilation effect and symptom distress level.RESULTSThe diameter of the esophagus (R1) increased before each dilation in patients undergoing esophageal dilation (P < 0.05). The diameter (R2) increased after dilation (P < 0.05); the dilation effect (R2-R1) decreased with the number of dilations (P < 0.05). The total symptom distress score significantly increased with the number of dilations (P < 0.05). The symptom distress scores of the patients were negatively correlated (P < 0.05) with the previous dilation effect (R2-R1) and the esophageal diameter (R2) after the previous dilation. After the 1st to 4th dilations, the patient's symptom distress score was negatively correlated with the esophageal diameter (R12) before the next dilation, while there was no significant correlation (P > 0.05) with the other dilations.CONCLUSIONIn patients who have undergone repeated dilations, better effect stands for lower symptom distress level and the increase in symptom distress has a prompt effect on the severity of the next occurrence of restenosis.

Change of Uncertainty in Illness and Unmet Care Needs in Patients With Recurrent Hepatocellular Carcinoma During Active Treatment.

Uncertainty about or related to cancer-related treatment and prognosis is commonly experienced by patients with hepatocellular carcinoma and might be associated with unmet care needs. However, their dynamic associations have not been examined in this population. The aim of this study was to explore change in unmet care needs and uncertainty under different levels of uncertainty (low vs high) before discharge and the significant factors related to change of uncertainty in patients with recurrent hepatocellular carcinoma after treatment. A set of questionnaires was used to collect data including symptom distress, supportive care needs, and uncertainty of illness before discharge (T0), 1 month after discharge (T1), and 2 months after discharge (T2). The significant factors related to uncertainty were identified by generalized estimating equations. The patients with high uncertainty, who were younger in age, had significantly higher levels of symptom distress and unmet care needs. Before discharge, the patients' highest levels of unmet needs were psychological in the high-uncertainty group. Patients with jobs, higher unmet care needs, and high uncertainty before discharge had higher levels of uncertainty over time. The changes in uncertainty were significantly associated with unmet care needs over time, and the baseline level of uncertainty was a significant factor related to the change of uncertainty. Healthcare providers should take into account each individual's age, levels of psychological need, and symptom distress and should offer personalized information related to psychological needs and symptom management to decrease levels of uncertainty before discharge.

Benefits of home-based multidisciplinary exercise and supportive care in inoperable non-small cell lung cancer \u2013 protocol for a phase II randomised controlled trial

BackgroundLung cancer is one of the most commonly diagnosed cancers, and is a leading cause of cancer mortality world-wide. Due to lack of early specific symptoms, the majority of patients present with advanced, inoperable disease and five-year relative survival across all stages of non-small cell lung cancer (NSCLC) is 14%. People with lung cancer also report higher levels of symptom distress than those with other forms of cancer. Several benefits for survival and patient reported outcomes are reported from physical activity and exercise in other tumour groups. We report the protocol for a study investigating the benefits of exercise, behaviour change and symptom self-management for patients with recently diagnosed, inoperable, NSCLC.MethodsThis multi-site, parallel-group, assessor-blinded randomised controlled trial, powered for superiority, aims to assess functional and patient-reported outcomes of a multi-disciplinary, home-based exercise and supportive care program for people commencing treatment. Ninety-two participants are being recruited from three tertiary-care hospitals in Melbourne, Australia. Following baseline testing, participants are randomised using concealed allocation, to receive either: a) 8 weeks of home-based exercise (comprising an individualised endurance and resistance exercise program and behaviour change coaching) and nurse-delivered symptom self-management intervention or b) usual care. The primary outcome is the between-group difference in the change in functional exercise capacity (six-minute walk distance) from baseline to post-program assessment. Secondary outcomes include: objective and self-reported physical activity levels, physical activity self-efficacy, behavioural regulation of motivation to exercise and resilience, muscle strength (quadriceps and grip), health-related quality of life, anxiety and depression and symptom interference.DiscussionThere is a lack of evidence regarding the benefit of exercise intervention for people with NSCLC, particularly in those with inoperable disease receiving treatment. This trial will contribute to evidence currently being generated in national and international trials by implementing and evaluating a home-based program including three components not yet combined in previous research, for people with inoperable NSCLC receiving active treatment and involving longer-term follow-up of outcomes. This trial is ongoing and currently recruiting.Trial registrationThis trial was prospectively registered on the Australian New Zealand Clinical Trials Registry (ACTRN12614001268639: (4/12/14).

Postoperative Distress of Orthopedic Ambulatory Surgery Patients

Patients who undergo orthopedic ambulatory surgery have reported high levels of symptom distress during recovery at home. Content analysis of this qualitative descriptive study identified techniques of symptom management that effectively reduce postoperative symptom distress after orthopedic ambulatory surgery and provided insight into facilitators and barriers to postsurgery self-management. Focus groups consisted of 19 patients and caregivers recruited from a university orthopedic surgery office. The authors identified the common themes as distressing symptoms and consequences of surgery, management of symptoms, and self-management facilitators and barriers. Participants in our study noted the lack of continuity of care after discharge and wanted to know the realities of symptoms and receive more detailed information from care providers on how to self-manage symptoms. Nurses involved in the care of these patients should focus not only on short-term recovery, but on preparing patients to manage sustained recovery issues at home.

Evolution of Symptom Burden of Advanced Lung Cancer Over a Decade

IntroductionLung cancer is associated with higher levels of symptom distress and unmet needs than other cancer types. We assessed changes in symptoms, function, understanding, and preferences of patients with advanced lung cancer over a 10-year period. Materials and MethodsA 26-item self-administered questionnaire was used to assess symptom burden, functional impairment, knowledge of disease and treatment, and information preferences. The survey was administered to consecutive outpatients with advanced lung cancer first in 2002 and a second cohort in 2012. ResultsA total of 108 patients with advanced lung cancer were surveyed in 2002, and 100 in 2012. Rates of severe physical symptoms were similar over the 10-year period. The most common symptoms remained fatigue, cough, and dyspnea. One-third perceived major impairment of daily activities from lung cancer. Significant anxiety was reported by at least 20%; nearly a quarter reported being unable to meet family needs. More patients in 2012 received information on treatment benefits, side effects, and clinical trials. Only 40% reported having end-of-life wishes, and fewer than half had discussed these with their oncologist. Over time, more patients expressed a preference for treatment associated with increased survival even if it compromised quality of life. Half were interested in Internet-based resources, most in print media, and a growing number in telephone support. ConclusionPatients with advanced lung cancer continue to experience significant symptom distress and unmet needs despite advances in treatment. Comprehensive assessment and symptom, psychological, financial, and information support remain key areas for improvement in the care of patients with advanced lung cancer.

Differences in Symptom Distress Based on Gender and Palliative Care Designation Among Hospitalized Patients.

To explore patient-reported symptom distress in relation to documentation of symptoms and palliative care designation in hospital inpatients. This cross-sectional study analyzed data from 710 inpatients at two large hospitals in Sweden using the Edmonton Symptom Assessment Scale and the Memorial Symptom Assessment Scale. Chart reviews focused on nurses' and physicians' symptom documentation and palliative turning point. Descriptive statistics were calculated for all variables and provided summaries about the sample. Patients were grouped according to gender, age, palliative care designation, and symptom documentation. The t test and chi-square test were used to calculate whether symptom distress varied between groups. A two-way analysis of variance was conducted for multiple comparisons to explore the impact of gender and age on mean symptom distress. Females reported higher levels of symptom distress than did males related to pain, fatigue, and nausea. When comparing symptom distress between males and females with documentation pertaining to symptoms, there were significant differences implying that females had to report higher levels of symptom distress than males in order to have their symptoms documented. Females need to report higher levels of symptom distress than do males for healthcare professionals to identify and document their symptoms. It can be hypothesized that females are not receiving the same attention and symptom alleviation as men. If so, this highlights a serious inequality in care that requires further exploration. Considering that common reasons why people seek health care are troublesome symptoms of illness, and that the clinical and demographic characteristics of inpatients are changing towards more advanced ages with serious illnesses, inadequate symptom assessment and management are a serious threat to the care quality.

Postoperative Symptom Distress of Laparoscopic Cholecystectomy Ambulatory Surgery Patients

Patients who undergo same-day laparoscopic cholecystectomy (LC) have reported high levels of symptom distress during recovery at home.

Prevalence of severe depressive symptoms increases as death approaches and is associated with disease burden, tangible social support, and high self-perceived burden to others.

Terminally ill cancer patients experience progressive functional decline, accelerating symptom severity, deteriorating social support, and self-perceived burden to others (SPB), predisposing them to depressive symptoms. However, changes in the prevalence of severe depressive symptoms as death approaches and the unique roles of these four variables have not been adequately studied. This study explored longitudinal changes in and associations of symptom distress, functional dependence, social support, and SPB with prevalence of severe depressive symptoms in the last year of life. A convenience sample of 325 cancer patients was longitudinally followed until death. Prevalence of severe depressive symptoms (score ≥11 on the depression subscale of the Hospital Anxiety and Depression Scale) was examined by multivariate logistic regression modeling with the generalized estimating equation. The prevalence of severe depressive symptoms increased as death approached. The likelihood of severe depressive symptoms was significantly higher in patients who had higher levels of symptom distress and functional dependence, received greater tangible support, and reported high SPB, but lower for patients reporting a higher level of affectionate support and positive social interactions with their supportive network. Prevalence of severe depressive symptoms increased as death approached and was associated with several modifiable factors. Healthcare professionals should become familiar with these factors to identify vulnerable patients. To decrease the likelihood of terminally ill cancer patients' severe depressive symptoms, they should receive effective interventions to manage their symptoms, appropriately foster social support to restore their fragile self-esteem due to depending on others, and lighten their SPB.

Caregiver Strain, Quality of Life, and Symptom Distress Among Dyads of African American Cancer Survivors and Caregivers

African Americans are more likely to present in the advanced stages of cancer, but we know very little about the cancer survivorship experiences for them and their caregivers. Guided by the Quality of Life and Symptom Distress Interactional Framework, this descriptive, correlational study examined relationships among caregiver strain, caregivers’ quality of life (QoL), survivors’ symptom distress, and survivors’ QoL among dyads of African American cancer survivors and their primary caregiver. Survivors were recruited in the outpatient department at a comprehensive cancer center and nominated their caregiver who was contacted by phone. Data were collected using the Caregiver Strain Index, the Medical Outcome Survey Short Form 36, the Symptom Distress Scale, and a Demographic Questionnaire. There were 68 survivor-caregiver dyads (N = 136). The average age of the survivors was 52 years comparedwith 49 years for the caregivers, and the majority was female. Survivors were about 3 years post diagnosis, and the majority was still receiving treatment. Over one-third of the caregivers indicated high levels of strain, and their QoL was lower than the population norm. There were strong relationships between caregiver strain and subscales of the QoL measure. Survivors reported high levels of symptom distress and low QoL. There was a strong relationship between the caregiver strain, symptom distress of the survivor, and survivor QoL. Interventions within palliative care must be culturally specific and address the unmet needs of the survivor and caregiver.

How User Characteristics Affect Use Patterns in Web-Based Illness Management Support for Patients with Breast and Prostate Cancer

BackgroundFrequently eHealth applications are not used as intended and they have high attrition rates; therefore, a better understanding of patients’ need for support is warranted. Specifically, more research is needed to identify which system components target different patient groups and under what conditions.ObjectiveTo explore user characteristics associated with the use of different system components of a Web-based illness management support system for cancer patients (WebChoice).MethodsFor this secondary post hoc analysis of a large randomized controlled trial (RCT), in which WebChoice was tested among 325 breast cancer and prostate cancer patients who were followed with repeated measures for 1 year, usage patterns of 162 cancer patients in the intervention arm with access to WebChoice were extracted from the user log. Logistic regression was performed to identify patterns of associations between system use and patient characteristics. Latent class analyses (LCA) were performed to identify associations among the use of different system components and levels of social support, symptom distress, depression, self-efficacy, and health-related quality of life.ResultsApproximately two-thirds (103/162, 63.6%) of the patients logged on to WebChoice more than once, and were defined as users. A high level of computer experience (odds ratio [OR] 3.77, 95% CI 1.20-11.91) and not having other illnesses in addition to cancer (OR 2.10, 95% CI 1.02-4.34) increased the overall probability of using WebChoice. LCA showed that both men with prostate cancer and women with breast cancer who had low scores on social support accompanied with high levels of symptom distress and high levels of depression were more likely to use the e-message component. For men with prostate cancer, these variables were also associated with high use of the self-management advice component. We found important differences between men with prostate cancer and women with breast cancer when associations between WebChoice use and each user characteristic were analyzed separately. High use of all components was associated with low levels of social support among women with breast cancer, but not among men with prostate cancer. High use of e-messages, advice, and the discussion forum were associated with high levels of depression among women with breast cancer, but not among men with prostate cancer. For men with prostate cancer (but not women with breast cancer), high use of symptom assessments, advice, and the discussion forum were associated with high levels of symptom distress. However, it is unclear whether these findings can be attributed to differences related to diagnosis, gender, or both.ConclusionsThis study provides evidence that different user characteristics are associated with different use patterns. Such information is crucial to target Web-based support systems to different patient groups. LCA is a useful technique to identify subgroups of users. In our study, e-messages and self-management advice were highly used components for patients who had low levels of social support and high illness burden, suggesting that patients with these characteristics may find such tools particularly useful.Trial RegistrationClinicalTrials.gov NCT00710658; http://clinicaltrials.gov/ct2/show/NCT00710658 (Archived by WebCite at http://www.webcitation.org/6EmEWZiwz)

Symptom experiences in patients after heart transplantation

Patients' perceptions of immunosuppression-related symptom experience impact on quality of life and medication adherence. Using The Modified Transplant Symptom Occurrence and Symptom Distress Scale capturing items on symptom occurrence and symptom distress, 261 heart transplant recipients reported on their symptom experiences. Symptoms occurring with the highest prevalence were tiredness, lack of energy, and nervousness. Men showed erectile dysfunction causing the most distress. Women and younger patients reported significantly higher levels of symptom distress. Distress levels increased with time after transplant. Investigating responses to immunosuppression-related symptom experiences should help develop interventional methods to support long-term outcome.

Course and predictors of depressive symptoms among family caregivers of terminally ill cancer patients until their death

Few studies have investigated the impact of providing end-of-life care on family caregivers' depressive symptoms over time, especially until the patient's death. The purpose of this study was to identify the course and predictors of depressive symptoms in caregivers of terminally ill cancer patients until they died. For this prospective, longitudinal study of 193 caregivers, data were collected using the Center for Epidemiological Studies Depression Scale, Symptom Distress Scale, Medical Outcomes Study Social Support Survey, and Caregiver Reaction Assessment scale. The course and predictors of depressive symptoms were analyzed using the generalized estimating equation model. Caregivers' depressive symptoms increased as the patient's death approached. Spousal or adult child family caregivers suffered more depressive symptoms if they self-identified as lacking social support and confidence in offering substantial assistance for younger terminally ill cancer patients with higher levels of symptom distress. Caregivers were susceptible to higher levels of depressive symptoms if they were heavily burdened by caregiving, that is, experienced more disruptions in schedules, greater health deterioration, stronger sense of family abandonment, and lower caregiver esteem. Psychological well-being of caregivers of terminally ill cancer patients deteriorated in response to progression of the patient's disease and impending death. Effective interventions should be developed and provided to high-risk caregivers as identified in our study. Increasing caregivers' strength of perceived social support, facilitating their confidence in caregiving, and alleviating their subjective burden may lessen the development of depressive symptoms in caregivers of terminally ill cancer patients throughout the dying process.