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.     

Translation and evaluation of Chinese version of the symptom experience index

Symptom assessment is crucial for patient care through the entire disease trajectory. Patients often experience multiple symptoms concurrently. The symptom experience index is reliable and valid as an instrument developed in the USA for assessing multiple symptoms and distress. The aim of the study was to translate and evaluate the Chinese version of the instrument in healthy adults and oncology patients. This is a psychometric study with a cross‐sectional design. To ensure the semantic equivalence and content validity, an integrative translation method was employed to translate the English version into Chinese language. The participants were recruited during 2014 from a large university, two university‐affiliated hospitals and a community in Changchun, China. The Chinese version demonstrated high internal consistency, test–retest reliability and content validity. Construct validity was supported by factor analysis and significant differences of symptom experience scores between healthy and oncology groups. Participants' acceptance of the Chinese version and its ability to collect adequate data among Chinese population provided evidence for using this version among Chinese population. This study provided initial evidence to support the psychometric properties of the Chinese version. The Chinese version demonstrated adequate reliability and validity to assess multiple symptom experience by Chinese populations.     

中文版器官移植患者症状发生和症状困扰量表的信度及效度检验

目的：翻译英文版器官移植患者症状发生和症状困扰量表（MTSOSD）并检验其信度及效度。方法：在征得原作者同意后,取得英文版MTSOSD,通过翻译和本土化形成中文版MTSOSD。采用中文版MTSOSD、健康相关生活质量问卷（SF-36）及医院焦虑抑郁量表中的抑郁分量表对106例肾移植患者进行测评,根据是否抑郁患者的症状评分判断工具的区分效度,根据症状与生活质量之间的相关性判断工具的校标关联效度;在1周后对12例患者进行二次测评,根据两次测评的相关性判断工具的重测信度。结果：抑郁组患者的症状发生总分及症状困扰总分均高于非抑郁组患者,差异有统计学意义（P〈0.01）;106例患者的症状发生总分、症状困扰总分与除外“生理功能”的SF-36各维度得分均呈显著负相关,相关系数为-0.391～-0.510（P〈0.01）;中文版MTSOSD的Cronbach’sα系数为0.897（按照症状发生情况）和0.919（按照症状困扰情况）,重测信度系数为0.825（按照症状发生情况）和0.817（按照症状困扰情况）。结论：中文版MTSOSD具有较好的信度和效度,适用于在临床中测评器官移植患者免疫抑制治疗的相关症状。     

Measuring the symptom experience of Chinese cancer patients: a validation of the Chinese version of the memorial symptom assessment scale

The purpose of this study was to translate the Memorial Symptom Assessment Scale (MSAS) into Chinese and evaluate the psychometric properties of this version. The original MSAS is a 32-item, patient-rated measure that was developed to assess common cancer-related physical and psychological symptoms with respect to frequency, intensity, and distress. In this study, a two-phase design was used. Phase I involved iterative forward-backward translation, testing of content validity (CVI) and a pretest. Phase II established the psychometric properties of the Chinese version MSAS (MSAS-Ch). Results showed that the MSAS-Ch achieved content relevancy CVI of 0.94 and semantic equivalence CVI of 0.94. Pretesting was performed in 10 cancer patients, and the results revealed adequate content coverage and comprehensibility of the MSAS-Ch. A convenience sample of 370 patients undergoing cancer therapy or at the early post-treatment stage was recruited for psychometric evaluation. Confirmatory factor analysis confirmed the construct validity of the MSAS-Ch, with a good fit between the factor structure of the original version and our present sample data (goodness-of-fit indices all above 0.95). The internal consistency reliability of subscales and total MSAS-Ch was moderately high, with Cronbach alpha coefficients ranging from 0.79 to 0.87. The test-retest intraclass correlation results for the subscale and total MSAS-Ch ranged from 0.68 to 0.79. The subscale scores of MSAS-Ch were moderately correlated with the scores on various validation measurements that assessed psychological distress, pain, and health-related quality of life (r = 0.46-0.65, P < 0.01), confirming that they were measurements of similar constructs. The validity of the construct validity was also supported by comparing the MSAS-Ch scores for subpopulations that varied clinically. Inpatients and patients with poorer performance status scored higher on the MSAS-Ch subscale and total scores than outpatients and patients with higher performance status (P < 0.05). Our study shows that the MSAS-Ch has adequate psychometric properties of validity and reliability, and can be used to assess symptoms during cancer therapy and at the early post-treatment stage in Chinese-speaking patients.     

Psychometric properties of the "Modified Transplant Symptom Occurrence and Symptom Distress Scale".

The aim of this study was to assess key aspects of the reliability and validity of the "Modified Transplant Symptom Occurrence and Distress Scale," an instrument measuring symptom experience associated with side effects of triple drug therapy in transplant patients. This cross-sectional, comparative study included 108 renal transplant recipients (61% men; 39% women) with a median age of 47 years and a median posttransplant status of 5.5 years. Renal transplant patients were matched by age and gender with 108 healthy control persons not taking immunosuppressive drugs. Content validity, construct validity and discriminant validity of the instrument were substantiated. Internal consistency reliability was not useful to assess in this instrument, as the conditions for calculating Cronbach's alpha were not satisfied. These findings document the validity of the "Modified Transplant Symptom Occurrence and Symptom Distress Scale" as an instrument to measure symptom experience with immunosuppressive drugs.     

Differences in the Symptom Experience of Older Oncology Outpatients

ContextThe relatively low number of older patients in cancer trials limits knowledge of how older adults experience symptoms associated with cancer and its treatment.ObjectivesThis study evaluated for differences in the symptom experience across four older age groups (60–64, 65–69, 70–74, ≥75 years).MethodsDemographic, clinical, and symptom data from 330 patients aged >60 years who participated in one Australian and two U.S. studies were evaluated. The Memorial Symptom Assessment Scale was used to evaluate the occurrence, severity, frequency, and distress of 32 symptoms commonly associated with cancer and its treatment.ResultsOn average, regardless of the age group, patients reported 10 concurrent symptoms. The most prevalent symptoms were physical in nature. Worrying was the most common psychological symptom. For 28 (87.5%) of the 32 Memorial Symptom Assessment Scale symptoms, no age-related differences were found in symptom occurrence rates. For symptom severity ratings, an age-related trend was found for difficulty swallowing. As age increased, severity of difficulty swallowing decreased. For symptom frequency, age-related trends were found for feeling irritable and diarrhea, with both decreasing in frequency as age increased. For symptom distress, age-related trends were found for lack of energy, shortness of breath, feeling bloated, and difficulty swallowing. As age increased, these symptoms received lower average distress ratings.ConclusionAdditional research is warranted to examine how age differences in symptom experience are influenced by treatment differences, aging-related changes in biological or psychological processes, or age-related response shift.     

维持性血液透析病人症状负担与自我效能、社会支持的相关性研究

目的:探讨维持性血液透析病人自我效能及社会支持与症状负担的现状与相关性。方法:采用一般资料调查表、血液透析病人症状负担量表、慢性病自我效能量表和社会支持量表对广州市某三级甲等医院和二级甲等医院的96例维持性血液透析病人进行调查。结果:维持性血液透析病人症状负担总分为(63.76±46.70)分,每例病人经历(14.10±7.91)个症状,症状发生率排名前5位的依次是瘙痒、皮肤干燥、疲乏、入睡困难、口干;维持性血液透析病人症状负担总分及各维度得分与自我效能总分及各维度得分呈明显负相关(P<0.01);维持性血液透析病人的症状频率得分与社会支持总分、主观社会支持得分呈负相关(r=-0.202、-0.205,P<0.05)。结论:维持性血液透析病人同时经历多个症状,制定相关措施提高病人的自我效能,指导病人正确利用社会支持,可改善病人的症状负担。     

慢性阻塞性肺疾病病人症状体验与自我效能感的相关性研究

目的:调查慢性阻塞性肺疾病病人的症状体验情况和自我效能感水平,分析两者间的相关性。方法:纳入2018年10月—2019年6月就诊于医院的147例慢性阻塞性肺疾病病人作为研究对象。病人填写一般资料调查表、记忆症状评估量表和慢性阻塞性肺疾病自我效能感量表。结果:病人最常见的5个症状分别为气促/呼吸困难、缺乏活力、咳嗽、焦虑不安和睡眠不足。自我效能感量表总分为(78.13±17.57)分,得分指标为50.4%。病人的症状体验得分与自我效能感量表得分呈负相关(P<0.05)。结论:慢性阻塞性肺疾病病人的症状体验较差,自我效能感为中等水平,两者之间呈负相关。临床医护人员要注意同时加强病人的症状管理和提高其自我效能感。     

Measuring the symptom experience of seriously ill cancer and noncancer hospitalized patients near the end of life with the memorial symptom assessment scale

The objectives of this study were twofold: (1) to explore and compare the symptom experience of seriously ill hospitalized cancer and noncancer patients near the end of life using the Memorial Symptom Assessment Scale (MSAS) and (2) to determine if the MSAS is a valid and useful measure of symptom distress for patients with noncancer conditions. This was a prospective cohort study of hospitalized patients with end-stage congestive heart disease, chronic pulmonary disease, cirrhosis, or metastatic cancer. Eligible patients were interviewed to ascertain symptom prevalence, severity and distress using the MSAS and levels of fatigue using the Piper Fatigue Scale (PFS). Sixty-six patients with metastatic cancer and 69 patients with end-stage disease were enrolled in the study. There was a significant difference in the prevalence of selected physical symptoms, but not psychological symptoms, between cancer and noncancer patients. There were no significant differences in symptom distress scores, a computed score of frequency, severity and distress, if the symptom was present. In both groups the principal components factor analysis with varimax rotation yielded one factor comprising psychological symptoms and a second factor comprising three subgroups of physical symptoms. Internal consistency was high for the psychological subscale (Cronbach alpha coefficients of 0.85 for the cancer group and 0.77 for the noncancer group) and for the physical subscale groupings, with coefficients ranging between 0.78 to 0.87. The symptom scores were significantly correlated with perceptions of fatigue. These findings show that both seriously ill cancer and noncancer patients experience symptom distress, and that the MSAS seems to be a reliable measure of symptom distress in noncancer patients, as well as with cancer patients.     

维持性血液透析患者症状困扰相关影响因素分析

目的通过对301例维持性血液透析患者症状困扰现况及相关影响因素分析,找出维持性血液透析患者症状困扰的主要症状,为临床治疗提供信息。方法采用方便抽样方法,使用自设的透析患者一般情况调查表、症状困扰量表、匹兹堡睡眠质量指数评定量表、综合主观性营养评估及综合医院焦虑、抑郁量表调查广东地区三家三级甲等医院及二家二级医院301例维持性血液透析患者。结果维持性血液透析患者各症状发生率为23.3%~80.4%之间,其中发生率最高的三种症状分别为皮肤干燥(80.4%)、瘙痒(77.7%)和易醒(76.1%),而严重程度得分最高的三种症状分别为瘙痒(3.41±1.53)分、性欲减退(2.83±1.57)分和易醒(2.70±1.27)分;透析患者症状困扰的症状有无得分及症状严重程度得分与匹兹堡睡眠质量指数总分、营养状况及焦虑、抑郁得分呈正相关(P0.001)。结论血液透析患者症状困扰的发生率比国外研究的水平高,与国内研究的水平相一致,维持性血液透析患者存在诸多症状,给日常生活带来较大困扰,医务人员应重视这些问题,采取相应的措施。     

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.     

Symptom experience of adult hospitalized medical-surgical patients

The purpose of this study is to describe the symptom experience of adult patients hospitalized in medical/surgical units, to examine the relationship between demographic characteristics and symptom experience, and to explore the relationship between symptom severity and symptom distress. Utilizing the Memorial Symptom Assessment Scale (MSAS), patients (n=334) were asked to convey the presence or absence of each of 31 symptoms, the severity of the symptoms, and the degree to which the symptoms distressed or bothered them. Higher levels of symptom distress were found in women and in those who were unpartnered. The average number of symptoms reported per patient was 9.31 (SD=5.15), with a mean symptom distress rating of 1.8 (SD=0.84) and a mean symptom severity rating of 1.65 (SD=0.83) on a 1-5 scale. The correlation between reports of symptom severity and symptom distress varied greatly by symptom, ranging from r=0.37 to r=0.82. This is the first study to examine the symptom prevalence, severity, and distress of hospitalized medical/surgical patients. The large sample size allowed for the detection of demographic differences in the reporting of symptom distress, and advances the current knowledge in the area.     

癌症患儿症状体验的现况调查

目的:评估和描述癌症患儿症状的发生率、频率、严重度和困扰度。方法:对125名4岁及以上的癌症患儿使用记忆症状量表进行自我评估或家长代评。结果:其症状发生率从1.6%(吞咽困难)到76.8%(出汗);最常发生(发生率≥40%)的症状包括:出汗、缺乏体力、没有食欲、急躁易怒、疼痛、恶心、感到紧张、体重下降、口干和咳嗽;在发生率<40%的症状中,困扰度较高(≥40%)的症状包括:小便有问题、吞咽困难、呕吐和口腔溃疡。处于治疗期的患儿其症状出现数量(11.35±4.10)多于未开始治疗或休疗的患儿(8.15±4.43),且不同治疗状态患儿的生理症状维度得分和总得分上差异有统计学意义(P<0.01)。结论:癌症患儿症状普遍存在,且极易受各种身心症状的困扰。运用多维的工具进行系统性的症状评估,可获得更多关于症状体验方面的信息,进而有利于医护人员更加有针对性地采取干预措施,以完善护理实践。     

Family reports of dying patients' distress: the adaptation of a research tool to assess global symptom distress in the last week of life

Understanding dying patients' symptom distress is an important component of efforts to improve care at the end of life. It can, however, be problematic to conduct research with dying patients. Family members can serve as sources of information about decedents' last days of life. In order to assess family reports of decedents' global symptom distress in the last week of life, we adapted the Memorial Symptom Assessment Scale Global Distress Index (MSAS-GDI), a brief measure of patient global symptom distress, for use in a retrospective study of family reports about end-of-life care. It was administered to a sample of 103 family members to assess the psychometric properties of the instrument in bereaved family members. The Family MSAS-GDI consists of questions about 11 psychological and physical symptoms commonly experienced by dying patients. The majority of family members were able to respond to the scale items. The mean Family MSAS-GDI score was 1.14 (SD = 0.87) with a range of 0 to 3.73. The scale demonstrated good internal consistency (alpha = 0.82). The average item-total correlation was r = 0.49 and the average inter-item correlation was r= 0.30, suggesting items were moderately correlated with the overall total scale and with each other. The Family MSAS-GDI could prove to be a useful tool in assessing and tracking global symptom distress in dying patients.     

The symptom experience in the first 100 days following allogeneic hematopoietic stem cell transplantation (HSCT)

Goals of work  Despite advances in allogeneic hematopoietic stem cell transplantation (HSCT), post-transplant complications are common, and patients’ symptom experience has not been well documented. Purpose  To characterize the symptom experience of adult patients pre-transplantation and days 0, 30, and 100 after allogeneic HSCT. Methods  Data from 76 participants enrolled in a prospective health-related quality of life (HRQL) study were used. Symptom occurrence, distress, and clusters were determined based on the 11 symptoms of the Symptom Distress Scale (SDS). Results  Participants were on average 40 years old (SD ± 13.5). The majority (54%) received reduced intensity conditioning. Prevalent symptoms included fatigue (68%) and worry (68%) at baseline, appetite change (88%) at day 0, and fatigue at days 30 (90%) and 100 (81%). Participants reported the following symptoms as severely distressing: worry (16%) [baseline], insomnia (32%) [day 0], appetite change (22%) [day 30], and fatigue (11%) [day 100]. The total SDS score was highest at day 0 (M = 26.6 ± 7.6) when the highest number of symptoms were reported [median = 8 (1–11)]. Symptoms formed clusters comprised of fatigue, appearance change, and worry at baseline, and fatigue, insomnia, and bowel changes at days 0 and 30. Compared to those with low symptom distress, participants with moderate/severe symptom distress reported poorer HRQL. Conclusion  Allogeneic HSCT patients present for transplantation with low symptom distress yet experience multiple symptoms and high symptom distress after HSCT conditioning. Understanding the symptom experience of allogeneic HSCT patients can guide management strategies and improve HRQL.     

The symptom inventory disability-specific short forms for multiple sclerosis: construct validity, responsiveness, and interpretation

Schwartz CE, Bode RK, Quaranto BR, Vollmer T. The Symptom Inventory Disability-Specific Short Forms for multiple sclerosis: construct validity, responsiveness, and interpretation.ObjectivesTo test the cross-sectional and longitudinal construct validity of the disability-specific short forms of the Symptom Inventory for multiple sclerosis, to compare its internal consistency reliability and construct validity with those of the original (1999) 29-item short form of the Symptom Inventory, and to provide for the new disability-specific short forms interpretation metrics for use in sample size calculation for future research.DesignA Web-based longitudinal study, with data collected at baseline and 6 months after baseline. Correlations evaluated the overlap among disease-specific and generic patient-reported outcome measures. Responsiveness was assessed by using symptom transition scores and modified standardized response means. Interpretation guidelines were provided by using Cohen's effect size and crosswalks to the disease-specific and generic quality-of-life measures.SettingNational Multiple Sclerosis Registry.ParticipantsPeople with multiple sclerosis (N=1142) who participated in the North American Research Committee on Multiple Sclerosis Registry.InterventionsNot applicable.Main Outcome MeasuresThe Symptom Inventory; the disease-specific Performance Scales and the Patient-Determined Disease Steps; the generic Short Form 12.ResultsThe Symptom Inventory evidenced convergent and divergent validity, and the disability-specific short forms evidenced similar psychometric performance as the 1999 short form but had slightly better alpha reliability. They also evidenced moderate responsiveness to clinically important change, with more responsiveness among those with mild and moderate disabilities than among those with severe disabilities. Effect sizes were larger among patients who reported symptom improvement, rather than deterioration, suggesting that the tool would be more useful in clinical research focused on testing whether an intervention improves symptom experience, particularly for patients with mild and moderate disabilities. Crosswalks provided graphic and numeric links between the Symptom Inventory and other patient-reported outcomes.ConclusionsThe Symptom Inventory can be useful for elucidating the patient's experience, but it varies considerably across and within disability groupings. Directions for future research are discussed.     

The memorial symptom assessment scale: modified for use in understanding family caregivers' perceptions of cancer patients' symptom experiences

The purpose of this study was to determine whether the Memorial Symptom Assessment Scale (MSAS) could serve as a feasible, reliable, and valid tool for use in assessing the reports of 98 family caregivers (FC) on the symptom experiences of advanced stage cancer patients. The MSAS consists of subscales that describe psychological symptom distress (PSYCH), physical symptom distress (PHYS), and global symptom distress (Global Distress Index [MSAS-GDI]). The majority of FCs was able to respond to 32 MSAS symptom items; however, the greatest difficulty in FC responding occurred on the 'sexual interest' item. The mean PSYCH score was 1.42 (SD=0.83), the mean PHYS score was 0.96 (SD=0.67), and the mean MSAS-GDI was 1.46 (SD=0.24). Internal consistency was high in the PHYS (alpha=0.84), PSYCH (alpha=0.82), and MSAS-GDI (alpha=0.84) subscales. The average item-scale correlation ranged between r=0.50 and 0.60, indicating that the items were moderately to strongly correlated with the respective total subscales. The average inter-item correlation ranged between r=0.30 and 0.45, indicating that the items were moderately correlated with each other on the respective subscales. Good to excellent intraclass correlations (ICC) with patients' ordinal ratings support the concurrent validity and utility of the PHYS and MSAS-GDI subscales in FC populations who care for cancer patients in the home setting. Depending on the symptom, a range of slight to substantial Kappa values on dichotomous PHYS and PSYCH items, and fair ICC values on the ordinal PSYCH subscale provide questionable validity in FC populations caring for cancer patients.