How the Term ‘Self-Management’ is Used in HIV Research in Low- and Middle-Income Countries: A Scoping Review

AIDS and Behavior - This scoping review assessed how the term ‘self-management’ (SM) is used in peer-reviewed literature describing HIV populations in low- and middle-income countries...     

Health care providers’ use and knowledge of the Edmonton Symptom Assessment System (ESAS): is there a need to improve information and training?

Objectives

The ESAS is a clinical symptom assessment tool developed for patients receiving palliative care for pain and symptom control. Recent studies have indicated that patients have difficulty understanding terminology and correct use of the ESAS, and that they appreciate the presence of a health care provider (HCP) to assist with ESAS completion. As appropriate assessment translates into effective treatment, it is important that HCPs have a good understanding of the tool. The purpose of this study was to assess HCPs’ use, knowledge, and training needs of the ESAS.

Methods

One hundred ninety-three HCPs in palliative care and chronic pain, who used the ESAS, were invited to participate in a survey.

Results

The response rate was 43 % (n?=?83), with 62 % nurses, 26 % physicians, and 12 % other specialties. Most participants were palliative care specialists (79 %). The majority (77 %) had a good understanding of the ESAS terms. Knowledge problems included distinguishing tiredness and drowsiness (25 %), interpreting shortness of breath as a combination of subjective and objective symptoms (19 %), not indicating current symptom level (14 %), and reverse scoring of well-being (13 %) and appetite (9 %). Reported challenges were misinterpretation of some ESAS terms, assessing patients with impaired communication, and lack of time and reliability of caregiver assessments. Participants offered suggestions regarding how their knowledge and use of the ESAS could be improved.

Conclusions

Suggestions for improving ESAS administration and training were to include term definitions and examples of how to ask about terms that might be challenging for patients. Furthermore, initial and ongoing training sessions might help to clarify issues with the tool.     

A Multicenter Study Comparing Two Numerical Versions of the Edmonton Symptom Assessment System in Palliative Care Patients

ContextThe Edmonton Symptom Assessment System (ESAS) is a widely used, self-report symptom intensity tool for assessing nine common symptoms in palliative care, with ratings ranging from 0 (none, best) to 10 (worst). Based on a “think-aloud” study of 20 advanced cancer patients, the ESAS was revised (ESAS-r).ObjectivesTo compare the consistency of patients’ symptom ratings and obtain patient perspectives regarding ease of understanding and completion between the ESAS and ESAS-r.MethodsCognitively intact patients (n = 160) were recruited from eight palliative care sites in Canada and Switzerland, using cross-sectional sampling (20 per site). Consenting patients completed the ESAS, ESAS-r, and a structured interview. Intraclass correlation coefficients (ICCs) were calculated to assess rating consistency.ResultsIn total, 1046 patients were screened. One hundred sixty were enrolled and evaluable (female 51%, median age 61 [range 34–92], lung cancer 26%, gastrointestinal cancer 22%). Mean ESAS scores ranged from 1.2 (nausea, standard deviation [SD] 2.1) to 4.3 (appetite, SD 3.3). ICCs ranged from 0.65 to 0.83, with lowest scores (<0.8) for drowsiness, appetite, and well-being. Although most patients rated both versions as very easy or easy to understand and complete, the ESAS-r was significantly easier to understand than the ESAS (P = 0.008). Significantly, more patients preferred the ESAS-r (39%) than the ESAS (14%, P < 0.001) because of its definitions, clarity, and format.ConclusionThe ESAS-r retains core elements of the ESAS, with improved interpretation and clarity of symptom intensity assessment. It represents the next generation of ESAS development, with further validation recommended for drowsiness, appetite, and well-being.     

A validation study of a pain classification system for advanced cancer patients using content experts: the Edmonton Classification System for Cancer Pain

The purpose of this study was to gather construct validity evidence for a pain classification system for advanced cancer patients using content experts. Two expert panels, representing regional (Panel A, n = 18) and national/international (Panel B, n = 52) palliative medicine and pain specialists, were purposefully selected to participate in a modified Delphi survey technique, to evaluate an existing pain classification system, the Revised Edmonton Staging System (rESS). Each panel participated in two survey rounds, with response rates of 67% (Panel A, Round 1), 39% (Panel A, Round 2), 56% (Panel B, Round 1) and 64% (Panel B, Round 2). The rESS consists of five features: mechanism of pain, incidental pain, psychological distress, addictive behavior and cognitive function. Most participants either agreed or strongly agreed with including the five existing rESS features in a pain classification system, ranging from 67% (Panel A, cognitive function) to 100% (Panel B, mechanism of pain). Most participants suggested keeping the current definitions for these features, with some revisions. Based on participant feedback, definitions for incidental pain, psychological distress, addictive behavior and cognitive function were revised, including the development of guidelines for use. To reflect its intended use as a classification system, the name of the instrument was changed to the Edmonton Classification System for Cancer Pain (ECS-CP).     

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.     

Communication between primary care physicians and radiation oncologists regarding patients with cancer treated with palliative radiotherapy.

PURPOSE: The purpose of this study was to assess the satisfaction and information needs of primary care physicians (PCPs) regarding communication with radiation oncologists (ROs), with respect to patients who receive palliative radiotherapy (RT). A selected objective was to evaluate the agreement between PCPs' expectations and the content of the RO letter sent after completion of RT. PCPs' knowledge of the role of palliative RT and their awareness of available patient support services were also determined. METHODS: The PCPs of patients discharged from the Cross Cancer Institute after receiving palliative RT were surveyed using a mail-out questionnaire. Questions regarding communication, RT knowledge, and awareness of support services were asked. The corresponding RO letter was reviewed. RESULTS: A total of 148 PCPs were identified and were mailed questionnaires, with 114 (77%) responding. Overall, 80% (87 of 109) of PCPs found the RO letter to be useful in patient management. However, there was poor (< 53%) agreement between PCPs' expectations and the actual content of the RO letter. Knowledge of the indications and effectiveness of palliative RT was limited, with PCPs obtaining a median score of 4 of a possible 8. Only 27% (31 of 114) of PCPs were aware of all five of the patient support services listed. CONCLUSION: Results show that although the majority of PCPs found the RO letter useful, they believed that the letter lacked important information while containing unnecessary details. Communication between PCPs and ROs needs improvement, especially considering that PCPs seem to have limited knowledge of palliative RT.     

Cancer pain assessment – Can we predict the need for specialist input?

We can anticipate that failure to assess cancer pain adequately will inevitably lead to inappropriate application of pain management options. However, it is not always standard practice to teach the limitations of the question ‘How bad is the pain?’, as well as the need to consider what may complicate pain management or be a poor prognostic factor for pain control. These issues may complicate cancer pain assessment and require specialist consultation. An internationally accepted classification system for cancer pain could provide the basis for a multidimensional assessment and a common language for clinical and research work. Research dating back to the late 1980s has resulted in the development of the Edmonton Classification System for Cancer Pain. This includes many of the factors that may be prognostic for the complexity of cancer pain management and can assist an inexperienced clinician in anticipating the need for specialist advice.     

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

PurposeThe study’s 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.MethodsPatients 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).ResultsA 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.ConclusionThe replication of previous findings suggests that the ECS-CP can predict pain complexity in a range of practice settings and countries.