Hanne C. Lie

Computer-Based Symptom Assessment Is Feasible in Patients With Advanced Cancer: Results From an International Multicenter Study, the EPCRC-CSA

CONTEXT Symptom assessment by computers is only effective if it provides valid results and is perceived as useful for clinical use by the end users: patients and health care providers. OBJECTIVES To identify factors associated with discontinuation, time expenditure, and patient preferences of the computerized symptom assessment used in an international multicenter data collection project: the European Palliative Care Research Collaborative-Computerized Symptom Assessment. METHODS Cancer patients with incurable metastatic or locally advanced disease were recruited from 17 centers in eight countries, providing 1017 records for analyses. Observer-based registrations and patient-reported measures on pain, depression, and physical function were entered on touch screen laptop computers. RESULTS The entire assessment was completed by 94.9% (n = 965), with median age 63 years (range 18-91 years) and median Karnofsky Performance Status (KPS) score of 70 (range 20-100). Predictive factors for noncompletion were higher age, lower KPS, and more pain (P ≤ 0.012). Time expenditure among completers increased with higher age, male gender, Norwegian nationality, number of comorbidities, and lower physical functioning (P ≤ 0.007) but was inversely related to pain levels and tiredness (P ≤ 0.03). Need for assistance was predicted by higher age, nationality other than Norwegian, lower KPS, and lower educational level (P < 0.001). More than 50% of patients preferred computerized assessment to a paper and pencil version. CONCLUSION The high completion rate shows that symptom assessment by computers is feasible in patients with advanced cancer. However, reduced performance status reduces compliance and increases the need for assistance. Future work should aim at identifying the minimum set of valid screening questions and refine the software to optimize symptom assessment and reduce respondent burden in frail patients.

Emotional concerns in follow-up consultations between paediatric oncologists and adolescent survivors: A video-based observational study

The present study aimed to explore (a) to what extent adolescent cancer survivors express emotional concerns during follow‐up consultations, (b) the content of these expressions, and (c) the responses to their concerns by the paediatric haemato‐oncologists (oncologists).

Depression in advanced cancer--assessment challenges and associations with disease load.

BACKGROUND Patients with advanced cancer commonly experience multiple somatic symptoms and declining functioning. Some highly prevalent symptoms also overlap with diagnostic symptom-criteria of depression. Thus, assessing depression in these patients can be challenging. We therefore investigated 1) the effect of different scoring-methods of depressive symptoms on detecting depression, and 2) the relationship between disease load and depression amongst patients with advanced cancer. METHODS The sample included 969 patients in the European Palliative Care Research Collaborative-Computer Symptom Assessment Study (EPCRC-CSA). Inclusion criteria were: incurable metastatic/locally advanced cancer and ≥ 18 years. Biomarkers and length of survival were registered from patient-records. Depression was assessed using the Patient Health Questionnaire (PHQ-9) and applying three scoring-methods: inclusive (algorithm scoring including the somatic symptom-criteria), exclusive (algorithm scoring excluding the somatic symptom-criteria) and sum-score (sum of all symptoms with a cut-off ≥ 8). RESULTS Depression prevalence rates varied according to scoring-method: inclusive 13.7%, exclusive 14.9% and sum-score 45.3%. Agreement between the algorithm scoring-methods was excellent (Kappa = 0.81), but low between the inclusive and sum scoring-methods (Kappa = 0.32). Depression was significantly associated with more pain (OR-range: 1.09-1.19, p < 0.001-0.04) and lower performance status (KPS-score, OR-range = 0.68-0.72, p < 0.001) irrespective of scoring-method. LIMITATIONS Depression was assessed using self-report, not clinical interviews. CONCLUSIONS The scoring-method, not excluding somatic symptoms, had the greatest effect on assessment outcomes. Increasing pain and poorer than expected physical condition should alert clinicians to possible co-morbid depression. The large discrepancy in prevalence rates between scoring-methods reinforces the need for consensus and validation of depression definitions and assessment in populations with high disease load.

Development of family and dietary habits questionnaires: the assessment of family processes , dietary habits and adolescents' impulsiveness in Norwegian adolescents and their parents

BackgroundThere is a need for valid and comprehensive measures of parental influence on children’s energy balance-related behaviours (EBRB). Such measures should be based on a theoretical framework, acknowledging the dynamic and complex nature of interactions occurring within a family. The aim of the Family & Dietary habits (F&D) project was to develop a conceptual framework identifying important and changeable family processes influencing dietary behaviours of 13-15 year olds. A second aim was to develop valid and reliable questionnaires for adolescents and their parents (both mothers and fathers) measuring these processes.MethodsA stepwise approach was used; (1) preparation of scope and structure, (2) development of the F&D questionnaires, (3) the conducting of pilot studies and (4) the conducting of validation studies (assessing internal reliability, test-retest reliability and confirmatory factor analysis) using data from a cross-sectional study.ResultsThe conceptual framework includes psychosocial concepts such as family functioning, cohesion, conflicts, communication, work-family stress, parental practices and parental style. The physical characteristics of the home environment include accessibility and availability of different food items, while family meals are the sociocultural setting included. Individual characteristics measured are dietary intake (vegetables and sugar-sweetened beverages) and adolescents’ impulsivity. The F&D questionnaires developed were tested in a test-retest (54 adolescents and 44 of their parents) and in a cross-sectional survey including 440 adolescents (13-15 year olds), 242 mothers and 155 fathers. The samples appear to be relatively representative for Norwegian adolescents and parents. For adolescents, mothers and fathers, the test-retest reliability of the dietary intake, frequencies of (family) meals, work-family stress and communication variables was satisfactory (ICC: 0.53-0.99). Barratt Impulsiveness Scale-Brief (BIS-Brief) was included, assessing adolescent’s impulsivity. The internal reliability (Cronbach’s alphas: 0.77/0.82) and test-retest reliability values (ICC: 0.74/0.77) of BIS-Brief were good.ConclusionsThe conceptual framework developed may be a useful tool in guiding measurement and assessment of the home food environment and family processes related to adolescents’ dietary habits, in particular and for EBRBs more generally. The results support the use of the F&D questionnaires as psychometrically sound tools to assess family characteristics and adolescent’s impulsivity.

The use of antidepressants in patients with advanced cancer—results from an international multicentre study

Depression is common in patients with advanced cancer; however, it is not often recognized and therefore not treated. The aims of this study were to examine the prevalence of the use of antidepressants (ADs) in an international cross‐sectional study sample and to identify sociodemographic and medical variables associated with their use.

Health literacy and communication explored from different angles

In recent years we have witnessed a growing interest in health literacy and the impact of literacy on provider-patient relationships and on outcomes of clinical communication such as adherence and patient satisfaction. In a narrow sense health literacy denotes the ability to read health related materials, while in a broader sense health literacy includes a number of abilities related to the acquisition and application of health related information. For instance, health literacy has been found to be a marker for communication problems between patients and providers, particularly in the technical, explanatory domains of clinician-patient dialogue [1] and there is a robust association between health literacy and disease knowledge in patients with chronic disease [2]. In this issue of Patient Education and Counseling (PEC) we publish a number of papers which in different ways illustrate the relevance of health literacy. Jordan and co-workers have conducted interviews with 48 individuals from three distinct groups in Australia: people from the general community, patients with a chronic condition, and individuals who had recently presented to a metropolitan public hospital emergency department [3]. The authors identified seven key abilities that participants identified as important in seeking, understanding and utilising health information within the healthcare setting: knowing when to seek health information, knowing where to seek health information, verbal communication skills, assertiveness, literacy skills, capacity to process and retain information and, finally, application skills. In the article a number of different viewpoints from patients are presented and discussed, and health literacy appears as a broad concept, with many different components. The authors conclude that ‘‘broader measures of health literacy are needed which assess attributes important to patients to effectively seek, understand and utilise health information’’. Johnson and collaborators have studied the extent to which social support may help limited-literacy patients to improve medication adherence [4]. They interviewed 275 pharmacy patients and assessed social support and adherence applying well established instruments, a modified 8-item version of the Morisky Adherence Scale and the Enriched Social Support Instrument (ESSI) respectively. Their main finding was that higher levels of social support was significantly associated with better medication adherence for patients with adequate health literacy but not for those with limited health literacy. There was, however, one exception to the latter finding: having a trusted confidant was associated with better medication adherence for limited literacy patients. Johnson et al. did not study the impact of literacy on adherence per se, but the moderating effect of literacy on the association

Mind the Gap: (Unmet) Information needs in cancer care

A few years ago, I had a conversation with a paediatric oncologist who expressed concerns about her experience in the clinic regarding providing information to the patients. The clinicians would spend much time providing information, she said, but the patients or their parents would later claim that they had not received such information. This apparent gap between information perceived to be provided and information perceived to be received may contribute to patients’ unmet information needs commonly reported in cancer care [1–3]. Information is important across the disease trajectory in cancer care [4]. Being diagnosed with cancer, or having one you love diagnosed with cancer, turns your life up-side down. Prognosis can be uncertain and cancer treatments are often aggressive and longlasting, associated with a range of severe acute and late effects. Providing patients and their families with adequate information across the different stages of the cancer trajectory is essential to help them adjust to and cope with the cancer, to make informed decisions and participate in their health care [5–8]. An increasing number of patients survive their cancer disease due to improvements in cancer detection and treatment [10]. Surviving cancer does, however, come at a cost in terms of increased risks of serious health problems caused by the disease and/or its treatment, so called late effects (e.g. [11,12]). Survivors need knowledge of their risks of late effects to enable self-care, informed life-style choices, to seek timely health care and to communicate their special health risks to non-oncology health care providers [2,11] patients’, survivors’ and family members’ information need is therefore important to help close the gap of unmet information needs and to provide quality, patient-centred care. In the February issue of Patient Education and Counseling, Janine Vetsch and colleagues [13] presented a study of the information needs of long-term survivors of childhood cancers and their parents. This work represents a rare effort to combine quantitative and qualitative methods to assess and better understand selfreported information needs. They found that the majority of survivors and parents reported unmet information needs, with the most frequently reported needs concerning late effects, cancer recurrence, secondary cancer and follow-up care. Just over 20% of survivors and parents reported no need for information. Combining questionnaires with in-depth interviews with a sub-sample of survivors and parents allowed Vetsch et al. [13] to explore their quantitative findings in details. In that process, they uncovered ambivalence about receiving information, especially about future health risks such as late effects. We found a similar sense of

The Edmonton Symptom Assessment System: Poor performance as screener for major depression in patients with incurable cancer:

Background: Depressive symptoms are prevalent in patients with advanced cancer, sometimes of a severity that fulfil the criteria for a major depressive episode. Aim: The aim of this study was to investigate how the item on depression in the Edmonton Symptom Assessment System with a 0–10 Numerical Rating Scale performed as a screener for major depressive episode. A possible improved performance by adding the Edmonton Symptom Assessment System-Anxiety item was also examined. Design: An international cross-sectional study including patients with incurable cancer was conducted. The Edmonton Symptom Assessment System score was compared against major depressive episode as assessed by the Patient Health Questionnaire-9. Screening performance was examined by sensitivity, specificity and the kappa coefficient. Setting: Patients with incurable cancer (n = 969), median age 63 years and from eight nationalities provided report. Median Karnofsky Performance Status was 70. Median survival was 229 days (205–255 days). Results: Patient Health Questionnaire-9 major depressive episode was present in 133 of 969 patients (13.7%). Edmonton Symptom Assessment System-Depression screening ability for Patient Health Questionnaire-9 major depressive episode was limited. Area under the receiver operating characteristic curve was 0.71 (0.66–0.76). Valid detection or exclusion of Patient Health Questionnaire-9 major depressive episode could not be concluded at any Edmonton Symptom Assessment System-Depression cut-off; by the cut-off Numerical Rating Scale ⩾ 2, sensitivity was 0.69 and specificity was 0.60. By the cut-off Numerical Rating Scale ⩾ 4, sensitivity was 0.51 and specificity was 0.82. Combined mean ratings by Edmonton Symptom Assessment System-Depression and Edmonton Symptom Assessment System-Anxiety revealed similar limited screening ability. Conclusion: The depression and anxiety items of the Edmonton Symptom Assessment System, a frequently used assessment tool in palliative care settings, seem to measure a construct other than major depressive episode as assessed by the Patient Health Questionnaire-9 instrument.

Tailoring the delivery of cancer diagnosis to adolescent and young adult patients displaying strong emotions: An observational study of two cases

Delivering the bad news of a cancer diagnosis to adolescent and young adult (AYA) patients who display strong emotions is particularly challenging not the least because AYAs are at a vulnerable developmental stage. Due to the lack of research on how to personalize the delivery of bad news to AYA patients’ emotions we report a case study of the communicative behavior of oncologists in two such consultations to describe the complexity of the phenomena at study. We audio-recorded and transcribed consultations where oncologists delivered cancer diagnoses to nine AYAs aged 12–25 years. Two of these patients displayed particularly strong emotional behavior (anger, fear, and sadness) and were chosen as cases. An interpretative analysis in three steps was applied to investigate the oncologists’ communicative behavior when delivering bad news. The focus was on how the oncologists responded to the strong but different emotional behaviors of the AYAs. We also related the oncologists’ communicative behavior to elements from a widely used protocol for delivering bad news. We found that the oncologists applied five communication strategies: elicit patient perspective, provide information, respond to patients expression of emotion (acknowledging and containing emotions), encourage commitment to treatment, and provide hope. The findings illustrate how oncologists’ communicative behavior may be tailored to individual expressions of emotions in AYA cancer patients.

Patients with advanced cancer and depression report a significantly higher symptom burden than non-depressed patients

OBJECTIVE Clinical observations indicate that patients with advanced cancer and depression report higher symptom burden than nondepressed patients. This is rarely examined empirically. Study aim was to investigate the association between self-reported depression disorder (DD) and symptoms in patients with advanced cancer controlled for prognostic factors. METHOD The sample included 935 patients, mean age 62, 52% males, from an international multicentre observational study (European Palliative Care Research Collaborative - Computerised Symptom Assessment and Classification of Pain, Depression and Physical Function). DD was assessed by the Patient Health Questionnaire-9 and scored with Diagnostic and Statistical Manual of Mental Disorder-5 algorithm for major depressive disorder, excluding somatic symptoms. Symptom burden was assessed by summing scores on somatic Edmonton Symptom Assessment Scale (ESAS) symptoms, excluding depression, anxiety, and well-being. Item-by-item scores and symptom burden of those with and without DD were compared using nonparametric Mann-Whitney U tests. The relative importance of sociodemographic, medical, and prognostic factors and DD in predicting symptom burden was assessed by hierarchical, multiple regression analyses. Result Patients with DD reported significantly higher scores on ESAS items and a twofold higher symptom burden compared with those without. Factors associated with higher symptom burden were as follows. DIAGNOSIS lung (β = 0.15, p < 0.001) or breast cancer (β = 0.08, p < 0.05); poorer prognosis: high C-reactive protein (β = 0.08, p < 0.05), lower Karnofsky Performance Status (β = -0.14, p < 0.001), and greater weight loss (β = -0.15, p < 0.001); taking opioids (β = 0.11, p < 0.01); and having DD (β = 0.23, p < 0.001). The full model explained 18% of the variance in symptom burden. DD explained 4.4% over and above that explained by all the other variables. Significance of results Depression in patients with advanced cancer is associated with higher symptom burden. These results encourage improved routines for identifying and treating those suffering from depression.