An instrument to measure symptom experience. Symptom occurrence and symptom distress

This article describes the development of an instrument that measures symptom experience (symptom occurrence and symptom distress). The Adapted Symptom Distress Scale-2 (ASDS-2), adapted from the McCorkle and Young Distress Scale, is a 31-item, 5-point, self-report paper-and-pencil instrument that measures patients' perception of the occurrence and distress of 14 symptoms: nausea, vomiting, pain, eating, sleep, fatigue, bowel elimination, breathing, coughing, concentration, lacrimation, changes in body temperature, appearance, and restlessness. Use of the instrument yields a total score for symptom experience, scores for symptom occurrence, scores for symptom distress, and subscale scores for six symptom categories: gastrointestinal, fatigue/restlessness, concentration, pain/discomfort, respiratory, and appearance. Reliability and validity were determined with well adults (n = 97), medical-surgical patients (n = 82), and oncology patients (n = 175). Findings revealed a Cronbach's alpha of 0.91 for symptom experience, 0.90 for symptom occurrence, and 0.76 for symptom distress. Cronbach's alpha for the subscales ranged from 0.38 for appearance symptoms to 0.83 for gastrointestinal symptoms. Inclusion of symptoms reported by patients with cancer strengthened content validity. A contrasted groups approach was used to demonstrate construct validity.     

肝移植受者症状经历与生存质量的相关性研究

目的了解肝移植受者在术后长期生存过程中的生存质量及其症状经历情况,探索症状经历与生存质量的相关性,为临床加强移植术后受者的随访管理,提高受者生存质量提供依据。方法对1999-2008年在四川大学华西医院肝移植中心接受原位肝移植手术的137例移植受者通过问卷方式调查其生存质量及症状经历情况。结果肝移植受者日常承受的症状平均达17种,其中疲倦乏力、失眠、情绪问题、头昏头痛、腹胀、腹泻等是最常见的不适症状,困扰着半数以上的受者。与一般人群相比,移植受者生存质量显著降低(P0.01)。多元回归分析显示,受者的症状经历、移植术后生存时间、家庭收入、社会支持情况是其生存质量的主要影响因素,其中受者的症状经历对其生存质量的影响尤为突出。结论肝移植受者在术后长期存活过程中承受着复杂的症状经历,关注受者的症状并提供积极有效的干预应是移植术后随访护理的重要内容。     

Symptom occurrence, symptom intensity, and symptom distress in patients undergoing high-dose chemotherapy with stem-cell transplantation

The main aim of this study was to investigate the patients' self-reported symptom occurrence, symptom intensity (SI), and symptom distress (SD) from admission for stem-cell transplantation (SCT) until discharge from the ward. Forty-three patients participated and data were collected at 7 different time-points by using the self-administered Symptom Frequency, Intensity, and Distress questionnaire for SCT (SFID-SCT). The results showed that symptom occurrence followed a curve on which the highest frequencies of symptoms were reported from the day of the SCT (T2) until the end of the protective care period (T5). The mean SI and SD scores became higher when the number of reported symptoms increased. Between T2 and T5, 33% to 54% of the patients reported >10 simultaneous symptoms. Symptoms reported by more than 50% of the patients during T2-T5 were tiredness, loss of appetite, mouth dryness, nausea, sleeping disturbances, diarrhea, and changes of taste. Loss of appetite, tiredness, and mouth dryness were, in descending order, the 3 symptoms reported as most intense and distressing. A statistically significantly higher SD-score was found for the patients undergoing allogeneic SCT on the day before start of the conditioning regimen, as compared to the patients undergoing autologous SCT. Patients reporting no anxiety on admission were found to have higher, mean SD-scores at the end of the hospital stay than anxious patients. The SFID-SCT questionnaire was found to give useful information not only about symptom occurrence but also about SI and SD. To use an instrument that distinguishes between these aspects of the symptom experience may help health care professionals to support the patients through the SCT-process.     

Stress, coping, and quality of life in adult kidney transplant recipients

The purpose of this study was to identify specific stressors and coping strategies identified by adult kidney transplant recipients in the first 6 months after transplantation. Quality of life was used as the outcome measure. Subscales were rationally constructed based on literature review and logic for both the stress and coping scales. Health-related items were identified as most stressful including uncertainty about whether the transplant will be a success and concern about risk of infections and/or viruses. Work-related items were least stressful. Strongly endorsed coping strategies included items on the Distancing/detachment and Self-control/accepting responsibility subscales. Quality of life scores were significantly higher after the transplant than before. Total stress was the important predictor of quality of life before transplant. Both total stress and total coping were important predictors of quality of life after transplant. The expanded transplant nursing role provides an opportunity to identify stressors and suggest appropriate coping strategies early in the transplant experience.     

Symptom distress, spirituality, and quality of life in African American breast cancer survivors

This study examined the relationships among the demographic characteristics, symptom distress, spirituality, and quality of life (QOL) of African American breast cancer survivors. A convenience sample of 30 survivors with a mean age of 56 years and a mean survival of 6 years was recruited from African American breast cancer support groups and churches in the Southeastern United States. Data were collected through face-to-face interviews using a demographic questionnaire, the Quality of Life Index-Cancer Version, the Symptom Distress Scale, and the Spiritual Perspective Scale. Statistically significant relationships were found between symptoms and QOL (r = -0.62, P < .05) and between spirituality and QOL (r = 0.70, P < .05). No statistically significant relationships were found between age at diagnosis, income, or education and QOL. This research suggests that symptoms and spirituality are associated with QOL. Culturally appropriate care should be provided to these women to reduce health disparities and to improve their QOL.     

Symptom distress and quality of life in patients with advanced congestive heart failure

Little is known about the burden of illness associated with advanced congestive heart failure (CHF). Understanding the needs of this population requires further information about symptoms and other factors related to quality of life. We studied a convenience sample of 103 community-dwelling patients with New York Heart Association Class III/IV CHF. The primary outcome, quality of life, was measured with the Multidimensional Index of Life Quality. Potential correlates of quality of life included overall symptom burden (Memorial Symptom Assessment Scale, MSAS), including global symptom distress (MSAS Global Distress Index, GDI); psychological state (Mental Health Inventory-5); functional status (Sickness Impact Profile); spirituality (Functional Assessment of Chronic Illness Therapy-Spirituality Scale); and co-morbid conditions (Charlson Comorbidity Index). Patients had a mean age of 67.1 years (SD=12.1); were mostly white (72.8%), male (71.8%), and married (51.5%); and had a mean ejection fraction of 22.3% (SD=6.8). The most prevalent symptoms were lack of energy (66%), dry mouth (62%), shortness of breath (56%), and drowsiness (52%). Pain was reported by about one-third of patients. For each of these symptoms, high symptom-related distress was reported by 14.1%-54.1%. Quality of life was moderately compromised (Multidimensional Index of Life Quality composite, median=56, possible range 12-84). Impairment in quality of life was strongly associated with global symptom distress (MSAS GDI; r=0.74, P<0.001); burden of comorbid conditions (r = -0.32, P=0.002), female sex (r=-0.22, P=0.03), functional impairment, particularly psychological impairment (r=-0.55, P<0.001), and poorer psychological well-being (r=0.68, P<0.001). In multivariate analyses, impairment in quality of life was significantly related to high symptom distress, poorer psychological well-being, and poor functional mobility (R2=0.67; P=0.002 for all). Distressful symptoms related to impaired quality of life included lack of energy (P=0.04), irritability (P=0.03), and drowsiness (P=0.02). Community-dwelling patients with advanced CHF experience numerous symptoms, significant symptom distress, and a compromised quality of life. Overall quality of life was strongly associated with symptom distress, psychological well-being and functional status. A focus on ameliorating prevalent physical symptoms and psychological distress, along with supportive measures that promote functional mobility, may lead to an improvement in the overall quality of life in this patient population.     

Stress, coping, and quality of life in family members of kidney transplant recipients

This study explored specific stressors and identified coping strategies used by family members of kidney transplant recipients in the first 6 months following transplantation. Quality of life was also briefly examined as the outcome measure. Health-related items were identified as most stressful, and work-related items as least stressful. Self-controlling and problem-solving coping strategies were most frequently used, and escape/avoidance strategies were least used. Findings from this study have implications for development of specific teaching plans for transplant recipient families, as well as for collaborative team exploration of family stress and coping.     

Virus infections in renal transplant recipients.

534 serum samples from 73 renal transplant recipients, 41 haemodialysis patients, and 99 blood and organ donors were examined serologically for antibodies against Cytomegalo, H. simplex (types 1 and 2), Varicella-zoster, Epstein-Barr, Adeno, Influenza, Parainfluenza, Respiratory syncytial, Measles, Picorna- and human Polyoma- Viruses. Serum specimens were stored in the lyophilized state until examined thus enabling a simultaneous testing of all samples belonging to one patient. All antigens, complement, and control antisera were prepared, lyophilized, and standardized in this laboratory. This has enabled the use of single batches of any preparation throughout the study. Serologic results with antigens of the Herpesvirus group (CMV, HSV and VZV) compared favourably with previous results showing that infections with these agents, especially with CMV, can frequently be encountered among transplant recipients. Our results have indicated a moderately increased incidence of infections with some Herpesviruses in haemodialysis patients as well. Infections with VZV, for instance, were as frequently demonstrated in these patients, as in transplant patients although the former received no immunosuppressive therapy. Serologic results with non-Herpesvirus antigens indicated an increased incidence of infections with Polyomavirus, Myxoviruses (Influenza, Parainfluenza and RS) and Picornaviruses among transplant recipients. The incidence of acute infections with RS virus among adults was unusually high and there is no evidence so far to indicate such a high frequency of RS infections in any other group of adults. We were unable to demonstrate acute infections with non-Herpesviruses among haemodialysis patients, even though most of the patients were followed over a period of more than 2 years. Virus isolation attempts were performed with samples of urines and biopsy or autopsy samples. 23 out of 28 cytopathic agents recovered from urines, throat-swabs and/or from organs of transplant recipients were identified as CMV. Two HSV type 1, 1 HSV type 2, and 2 Coxsackie B type 3 viruses were also isolated. No viruses were isolated from a series of 31 kidneys randomly selected among autopsy cases.     

Measuring symptom occurrence and symptom distress: development of the symptom experience index

AIM: This paper is a report of a study to assess reliability and construct validity of revised and refined version of the Adapted Symptom Distress Scale: the Symptom Experience Index (SEI). BACKGROUND: The development of the SEI, a 41-item Likert Scale assessing 20 symptoms, was based on self-regulation theory and an integrative conceptual analysis of symptom assessment and management. The model emphasizes the difference between the occurrence of a symptom (or multiple symptoms) and the distress (emotional) response to the occurrence of a symptom. It is the distress from symptom occurrence that promotes a person to take action and use known coping strategies to prevent the symptom occurrence or alleviate the distress from the symptom. METHOD: A contrast-group and test-retest approach was used to assess construct validity and reliability with a convenience sample of 158 patients at United States of America in 2003-2004. RESULTS: The SEI demonstrated reasonable internal consistency with a Cronbach's alpha of 0.91 for symptom experience, 0.85 for symptom occurrence and 0.84 for symptom distress. Test-retest reliability was supported by high intra-class correlation coefficients (symptom experience r = 0.93; symptom occurrence r = 0.94; symptom distress, r = 0.92). Construct validity was supported by statistically significant differences between patients and healthy adults. CONCLUSION: The SEI can be used as a baseline and outcome measure to assess the impact of multiple symptoms on patients, and the effectiveness of interventions to manage these symptoms.     

Time course and characteristics of symptom distress and quality of life at the end of life

This study sought to describe the characteristics and correlates of symptom distress and quality of life (QOL) among persons receiving hospice/palliative care. English-speaking adults (n=86), their nurses (n=86), and family caregivers (n=49) from 11 hospice/palliative care organizations completed the Memorial Symptom Assessment Scale (MSAS) and McGill Quality of Life Questionnaire (MQOL) at hospice/palliative care enrollment, at one week, two weeks, then monthly until death or discharge. Mixed effects modeling using proxy reports to impute missing patient-reported data were used to describe predictors of symptom distress and QOL. Given study population attrition due to death, analyses are limited to the first 17 days following hospice/palliative care admission. While lack of energy and pain were the most prevalent and distressing symptoms (prevalence 92% and 82%, respectively; mean MSAS scores 3.27 and 2.71, respectively), pain was identified as the most distressing symptom based on its contribution to MSAS summary scores and responses to a single-item "most distressing symptom" question. Pain, nonpain symptom distress, and MQOL scores remained fairly stable throughout the study period. Distress from all other physical symptoms was significantly associated with distress due to pain. There were no significant associations between patient characteristics and distress due to pain. While greater psychological symptom distress had a negative association with QOL, neither pain nor other physical symptom distress was associated with QOL. The persistence of significant symptom distress, particularly due to pain, argues for the need for enhanced evidence to guide care provided in the last days and weeks of life.     

Quality of life of pancreatic transplant recipients.

OBJECTIVE--To comprehensively assess and compare pancreas/kidney transplant recipients' quality of life. RESEARCH DESIGN AND METHODS--This quasi-experimental comparative study of 31 successful and 13 failed pancreas transplant recipients collected data from persons who had received pancreas and kidney transplants > or = 6 mo prior at a university tertiary care center. Physical and social function, symptoms, mental state, and sense of well-being of the recipients were assessed. RESULTS--Groups did not differ significantly regarding age, gender, marital status, onset or length of diabetes, comorbidity, type of prior dialysis, current kidney function, length of time since transplant, physical activity, symptom burden, emotional state, feelings of well-being, and present quality of life and health. A significant time by group interaction occurred for quality of life (P = 0.0013) and health (P = 0.0001). The successful group indicated that both quality of life and health were significantly better than in the past, and continued improvement was expected. The unsuccessful group did not have this perception. Members of the failed group were significantly more satisfied with their social support. The unsuccessful group's major concerns related to diabetes, not immunosuppression. CONCLUSIONS--Recipients of successful pancreas transplants perceived their improvement in health and quality of life to be significantly greater than the unsuccessful recipients.     

体育锻炼对肾移植受者生活质量的影响

背景:国外研究证实体育锻炼能提高肾移植受者的生活质量,而国内报道较少。目的:探讨体育锻炼对肾移植受者生活质量的影响。方法:选择53例稳定期肾移植受者,随机分为试验组(n=28)和对照组(n=25),试验组受者进行有计划的体育锻炼,对照组不参加体育运动;同时随机选取常规血液透析者51例比较其与肾移植受者生活质量差异。健康调查量表进行生活质量评分,观察规律体育运动6个月后两组在躯体功能、社会功能等8个维度方面的区别。结果与结论:肾移植6周左右受者在躯体功能、生理职能、躯体疼痛、总体健康、活力领域分值均高于血液透析患者(P<0.05),但情感职能、心理健康及社会功能领域比较,差异无显著性意义(P>0.05)。经过6个月的体育锻炼,试验组与对照组各项评分比移植后6周时均有所升高,但对照组在活力、心理健康、社会功能领域与移植后6周时改善不明显;试验组比对照组躯体功能、生理职能、躯体疼痛、活力、心理健康及社会功能领域评分均明显升高(P<0.05),说明体育锻炼能显著改善肾移植受者的生活质量。     

肝移植受者生存质量护理研究进展

肝移植是治疗各种终末期肝病的有效手段。根据中国肝移植注册网统计,国内已有近20000例肝病患者接受肝移植手术治疗［1］。近年来,随着移植技术的日趋成熟、术后管理的明显改善及新型免疫抑制剂的开发使用,肝移植受体术后存活率不断提高,5年生存率已达80%［2］。医学模式的转变让肝移植的研究目标也由初期的提高手术成功率和生存率逐渐转变为提高肝移植患者的生存质量［3］。本文就近年来肝移植受者术后生存质量的研究综述如下。     

Gastrointestinal carcinomas in renal transplant recipients

The development of malignancies in renal transplant recipients is well documented. Typically, these are cutaneous tumors or lymphomas. During the past 5 years, we have encountered six patients with documented carcinomas of the gastrointestinal tract, which developed after these patients received renal transplants. These carcinomas developed at an average of 10 years (range 2–16 years) after renal transplantation. There were three carcinomas of the colon, and one each of the esophagus, stomach, and anal canal. In many instances, the patients had examinations prior to transplantation which were normal. Several surveys of transplant recipients indicate there is an increased incidence of gastrointestinal tract malignancies after transplantation. These studies also recommend that screening of the gastrointestinal tract in long-term transplant recipients be performed. Since these patients are often imaged in the radiology department, radiologists must be aware of this possible complication.