Cheryl Nekolaichuk

A comparison of patient and proxy symptom assessments in advanced cancer patients

The purpose of this study was to compare patient and proxy (physician and nurse) assessments of symptoms in advanced cancer patients. The sample consisted of 49 patients with advanced cancer admitted to an acute palliative care unit. Three independent assessments were completed for each patient on two occasions within 11 days of admission. On each occasion, symptoms were rated independently by the patient and two proxies (treating physician and nurse), using the Edmonton Symptom Assessment System (ESAS). The ESAS is a nine-item visual analogue scale (VAS) for assessing pain, activity, nausea, depression, anxiety, drowsiness, appetite, well-being and shortness of breath. Symptom ratings were compared using a repeated-measures ANOVA procedure and correlations. Average physician ratings were generally lower than average patient ratings for both occasions. Average nurse ratings agreed more closely with patient ratings, with a trend towards lower ratings on occasion 1 and higher ratings on occasion 2. There was a significant rater (person rating the effects) effect (P < 0.01) for three of the nine symptoms: physicians rated drowsiness, shortness of breath and pain significantly lower than patients. For drowsiness and shortness of breath, these differences were clinically relevant, representing a difference of more than 12 mm on a 100-mm VAS. The accuracy of assessments amongst those rating the symptoms did not improve over time. Proxy assessments of symptom intensity, particularly by physicians, were significantly lower than patient assessments for three of the nine symptoms. Further research regarding the reliability of patient and proxy assessments is needed to assess and manage symptoms in advanced cancer effectively.

The Edmonton Symptom Assessment System: a 15-year retrospective review of validation studies (1991–2006)

Introduction: The purpose of this review was to identify and critique validation studies focusing on the Edmonton Symptom Assessment System (ESAS), a commonly used symptom assessment tool for advanced cancer and palliative patients. Methods: Using a comprehensive literature search, the authors identified and screened 87 publications. Thirteen articles were selected for in-depth review, based on the following inclusion criteria: psychometric studies with a primary focus on the ESAS, 1991–2006 publication dates and peer-reviewed English language publications. Results: Most studies involved cancer patients (n = 11). The ESAS format varied across studies, in terms of scale format, item number, item selection and language. Studies focused on gathering reliability estimates (n = 8), content validity evidence (n = 1), concurrent validity evidence (n = 5), predictive validity evidence (n = 1), and sensitivity and/or specificity (n = 3). None of these studies involved patients’ perspectives as a source of validity evidence. Discussion: The use of varying instrument formats and limited psychometric evidence support the need for further ESAS validation studies, including the involvement of patients.

Clinical Utility, Factor Analysis, and Further Validation of the Memorial Delirium Assessment Scale in Patients with Advanced Cancer Assessing Delirium in Advanced Cancer

Delirium is a common neuropsychiatric complication in patients with advanced cancer. The Memorial Delirium Assessment Scale (MDAS) is a recently developed 10‐item severity rating instrument. The purpose of the current prospective study was to further assess the clinical utility, factor structure, and validity of the MDAS in a relatively homogeneous population of patients with advanced cancer.

Assessing the Reliability of Patient, Nurse, and Family Caregiver Symptom Ratings in Hospitalized Advanced Cancer Patients

PURPOSE The purpose of this study was to examine the reliability of symptom assessments in advanced cancer patients under various conditions, including multiple raters (patients, nurses, and family caregivers), occasions, and symptoms. PATIENTS AND METHODS The study sample consisted of 32 advanced cancer patients admitted to a tertiary palliative care unit. Symptom assessments were completed for each patient on two separate occasions, approximately 24 hours apart. On each occasion, the patient, the primary care nurse, and a primary family caregiver independently completed an assessment using the Edmonton Symptom Assessment System (ESAS). The ESAS is a nine-item visual analogue scale for assessing symptoms in palliative patients. The reliability of the assessments (r) was examined using generalizability theory. RESULTS Three important findings emerged from this analysis. First, the analysis of individual symptom ratings provided a more meaningful representation of the symptom experience than total symptom distress ratings. Secondly, patients, nurses, and caregivers varied in their ratings across different patients, as well as in their ratings of shortness of breath, which may have been a result of individual rater variability. Finally, reliability estimates (r), based on a single rater and one occasion, were less than.70 for all symptoms, except appetite. These estimates improved substantially (r >/=.70) for all symptoms except anxiety and shortness of breath, using three raters on a single occasion or two raters across two occasions. CONCLUSION The findings from this study reinforce the need for the development of an integrated symptom assessment approach that combines patient and proxy assessments. Further research is needed to explore individual differences among raters.

Structuring the meaning of hope in health and illness

The purpose of this paper is to describe a conceptual model for hope that captures the personal meaning of this construct within the context of health and illness. To identify this model, a research tool was created based on the semantic differential technique, a well-validated and often used approach for quantifying personal or connotative meaning. This tool was distributed in the form of a questionnaire to a voluntary sample (n = 550), consisting of three primary subsamples: a healthy adult subsample (n = 146), a chronic and life-threatening illness subsample (n = 159) and a nursing subsample (n = 206). A multidimensional structure for the concept, Hope, was identified, using principal components analysis. Three primary factors defined this structure: personal spirit (personal dimension), risk (situational dimension) and authentic caring (interpersonal dimension). Personal spirit, a dominant factor, is characterized by a holistic configuration of hope elements, revolving around a core theme of meaning. Risk is primarily a predictability factor, targeted with an underlying component of boldness. The authentic caring factor has a substantial credibility component, linked with the theme of comfort. Three distinctive features characterize this model: (a) its ability to capture the dynamic qualitative experience of hope within a holistic multidimensional quantitative framework, (b) its representation of hope as a location in three-dimensional space and (c) its sensitivity to individual and group variability. This integrative model deepens our understanding of the experience of hope within health and illness at the theoretical, clinical and methodological levels.

The Edmonton Symptom Assessment System, a proposed tool for distress screening in cancer patients: development and refinement

The Edmonton Symptom Assessment System (ESAS) has been proposed as one element of a distress screening strategy in cancer patients. It consists of 11‐point numerical rating scales for self‐report of nine common symptoms of cancer, with a 10th scale for a patient‐specific symptom. The ESAS has undergone widespread adoption internationally for clinical, research and administrative purposes. Despite its rapid uptake, validity evidence has lagged behind, and concerns have been raised about feasibility and usefulness. The objective of this paper is to provide a synthesis of a program of research focusing on the psychometric properties of the ESAS.

An international multicentre validation study of a pain classification system for cancer patients.

PURPOSE The studys primary objective was to assess predictive validity of the Edmonton Classification System for Cancer Pain (ECS-CP) in a diverse international sample of advanced cancer patients. We hypothesised that patients with problematic pain syndromes would require more time to achieve stable pain control, more complicated analgesic regimens and higher opioid doses than patients with less complex pain syndromes. METHODS Patients with advanced cancer (n=1100) were recruited from 11 palliative care sites in Canada, USA, Ireland, Israel, Australia and New Zealand (100 per site). Palliative care specialists completed the ECS-CP for each patient. Daily patient pain ratings, number of breakthrough pain doses, types of pain adjuvants and opioid consumption were recorded until study end-point (i.e. stable pain control, discharge and death). RESULTS A pain syndrome was present in 944/1100 (86%). In univariate analysis, younger age, neuropathic pain, incident pain, psychological distress, addictive behaviour and initial pain intensity were significantly associated with more days to achieve stable pain control. In multivariate analysis, younger age, neuropathic pain, incident pain, psychological distress and pain intensity were independently associated with days to achieve stable pain control. Patients with neuropathic pain, incident pain, psychological distress or higher pain intensity required more adjuvants and higher final opioid doses; those with addictive behaviour required only higher final opioid doses. Cognitive deficit was associated with fewer days to stable pain control, lower final opioid doses and fewer pain adjuvants. CONCLUSION The replication of previous findings suggests that the ECS-CP can predict pain complexity in a range of practice settings and countries.

The Alberta Breakthrough Pain Assessment Tool for Cancer Patients: A Validation Study Using a Delphi Process and Patient Think-Aloud Interviews

Breakthrough pain is a prevalent cancer pain syndrome, and research is needed to identify more effective interventions to manage it. A validated tool to assess breakthrough pain in a standard and reliable manner is urgently needed to support the conduct of clinical trials in breakthrough pain. To address this need, we developed a breakthrough pain assessment tool for research purposes. The current study was undertaken to gather validity evidence for this breakthrough pain assessment tool, using a Delphi process involving an expert panel review, followed by a think-aloud process involving patients with cancer-related breakthrough pain. Two expert panels were formed: a national panel (within Canada; n=16) and an international panel (including experts from North America, UK, Europe, the Middle East, Australia, and New Zealand; n=22). Each panel participated in one anonymous survey round. Response rates were 56% (national panel) and 73% (international panel). The Delphi process revealed substantial consensus on the content of the tool, which increased between rounds of review. The overall level of agreement with the tool, averaged over the four evaluated aspects of all items, was 80% among national panelists and 88% among international panelists. Nine patients completed the think-aloud study. They were able to understand and complete the tool and provided specific direction on its improvement. The validity evidence gathered in this study suggests the Alberta Breakthrough Pain Assessment Tool is conceptually grounded and is understandable by patients and clinicians. Further validation of this tool as an assessment measure within clinical trials research is warranted.

The Edmonton symptom assessment system—what do patients think?

Goals of workThe Edmonton Symptom Assessment System (ESAS) is a tool for self-reporting of symptom intensity, initially developed for advanced cancer patients. It consists of numerical rating scales for nine common symptoms, with the option of adding a tenth. Despite its widespread use in palliative care, few studies have focused on its psychometric properties, with none involving patient perspectives. The purpose of this study was to gather validity evidence for the ESAS, by examining patients’ cognitive processes while completing the ESAS, understanding of terminology and numerical ratings, and opinions of the ESAS as a self-reporting tool.Materials and methodsEnglish-speaking advanced cancer patients, referred to a Pain and Symptom Control Consultation Service in a cancer centre, were recruited. Using a qualitative “think aloud” study design, patients completed the ESAS independently while being prompted to verbalize their thoughts. They then answered a structured questionnaire to elicit their opinions of the ESAS. Transcripts of audio-taped sessions were coded and analyzed.Main resultsTwenty patients were evaluable. Symptom ratings were influenced by current symptom profiles, temporal changes, symptom experience history and individual perceptions. Symptom interpretation and numerical rating assignments varied. Difficult terminology included tiredness versus drowsiness, depression, anxiety, appetite, and well-being. Most patients agreed with the item order and thought that the ESAS was easy to complete, with a health care professional present. Patients expressed a need to emphasize the timeframe as “now”.ConclusionModification of the tool and administration process may be warranted, but further study in other populations is needed.

Is Pain Intensity a Predictor of the Complexity of Cancer Pain Management

PURPOSE The lack of a standardized cancer pain (CP) classification system prompted the development of the Edmonton Classification System for Cancer Pain (ECS-CP). Its five features have demonstrated value in predicting pain management complexity. Pain intensity (PI) at initial assessment has been proposed as having additional predictive value. We hypothesized that patients with moderate to severe CP would take longer to achieve stable pain control, use higher opioid doses, and require more complicated analgesic regimens than would patients with mild CP at initial assessment. METHODS A secondary analysis of a multicenter ECS-CP validation study involving patients with advanced cancer was conducted (n = 591). Associations between PI and length of time to stable pain control (Cox regression), final opioid dose (Kruskal-Wallis one-way analysis of variance), and number of adjuvant modalities (chi(2)) were calculated. PI at initial assessment was defined using a numerical scale as mild (0 to 3), moderate (4 to 6), or severe (7 to 10). RESULTS Patients with moderate and severe pain required a significantly longer time to achieve stable pain control (P < .0001). PI was a significant predictor of length of time to stable pain control in the univariate regression analysis. The four significant predictors in the multivariate model were moderate and severe PI (P < .0001), age (P = .001), and neuropathic pain (P = .002). Patients with moderate to severe pain required significantly higher final opioid doses (P < .0001) and more adjuvant modalities (P = .015). CONCLUSION PI at initial assessment is a significant predictor of pain management complexity and length of time to stable pain control. Incorporation of this feature into the ECS-CP needs additional consideration.