Supportive Digital Health Service During Cancer Chemotherapy: Single-Arm Before-and-After Feasibility Study.

BACKGROUND: Digital supportive cancer care is recommended to improve patient outcomes. A portal was designed and embedded within the electronic medical record and public health portal of Iceland, consisting of symptom and needs monitoring, educational material, and messaging. OBJECTIVE: This study aims to assess (1) portal feasibility (adoption, engagement, usability, and acceptability), (2) potential predictors of usability and acceptability, and (3) the potential impact of the portal on patient-reported outcomes. METHODS: This was a single-arm, before-and-after feasibility study at a university hospital among patients with cancer who were undergoing chemotherapy. Participation included filling out the Edmonton Symptom Assessment System-Revised (ESASr) weekly and the Distress Thermometer and Problem List (DT&PL) 3 times; reading educational material and messaging; and completing study questionnaires. Clinical and portal engagement data were collected from medical records. Data from patients were collected electronically at baseline and 7 to 10 days after the third chemotherapy round. Usability was assessed using the System Usability Scale (score 0-100), and acceptability was assessed using a 35-item survey (score 1-5). Patient-reported outcome measures included ESASr and DT&PL; a single-item scale for quality of life, family support, and quality of care; and multi-item scales for health literacy (Brief Health Literacy Screener), health engagement (Patient Health Engagement Scale), self-care self-efficacy (Self-Care Self-Efficacy scale), symptom interference (MD Anderson Symptom Inventory), knowledge expectations (Hospital Patients' Knowledge Expectations), and received knowledge (Hospital Patients' Received Knowledge). Health care professionals were interviewed regarding portal feasibility. RESULTS: The portal adoption rate was 72% (103/143), and the portal use rate was 76.7% (79/103) over a mean 8.6 (SD 2.7) weeks. The study completion rate was 67% (69/103). The combined completion rate of the ESASr and DT&PL was 78.4% (685/874). Patients received a mean 41 (SD 13) information leaflets; 33% (26/79) initiated messaging, 73% (58/79) received messages, and 85% (67/79) received follow-up phone calls. The mean System Usability Scale score was 72.3 (SD 14.7), indicating good usability. Usability was predicted by age (ß=-.45), ESASr engagement (ß=.5), symptom interference (ß=.4), and received knowledge (ß=.41). The mean acceptability score, 3.97 (SD 0.5), was above average and predicted by age (ß=-.31), ESASr engagement (ß=.37), symptom interference (ß=.60), self-care self-efficacy (ß=.37), and received knowledge (ß=.41). ESASr scores improved for total symptom distress (P=.003; Cohen d=0.36), physical symptoms (P=.01; Cohen d=0.31), and emotional symptoms (P=.01; Cohen d=0.31). Daily symptom interference increased (P=.03; Cohen d=0.28), quality of life improved (P=.03; Cohen d=0.27) and health engagement (P=.006; Cohen d=0.35) improved, while knowledge expectations decreased (P≤.001; Cohen d=2.57). Health care professionals were positive toward the portal but called for clearer role delineation and follow-up. CONCLUSIONS: This study supports the feasibility of a support portal and the results indicate the possibility of improving patient outcomes, but further developments are warranted.

Phase III study of the European Organisation for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire.

PURPOSE: The purpose of this study is to develop a European Organisation for Research and Treatment of Cancer Quality of Life Group (EORTC QLG) questionnaire that captures the full range of physical, mental, and social health-related quality of life (HRQOL) issues relevant to disease-free cancer survivors. In this phase III study, we pretested the provisional core questionnaire (QLQ-SURV111) and aimed to identify essential and optional scales. METHODS: We pretested the QLQ-SURV111 in 492 cancer survivors from 17 countries with one of 11 cancer diagnoses. We applied the EORTC QLG decision rules and employed factor analysis and item response theory (IRT) analysis to assess and, where necessary, modify the hypothesized questionnaire scales. We calculated correlations between the survivorship scales and the QLQ-C30 summary score and carried out a Delphi survey among healthcare professionals, patient representatives, and cancer researchers to distinguish between essential and optional scales. RESULTS: Fifty-four percent of the sample was male, mean age was 60 years, and, on average, time since completion of treatment was 3.8 years. Eleven items were excluded, resulting in the QLQ-SURV100, with 12 functional and 9 symptom scales, a symptom checklist, 4 single items, and 10 conditional items. The essential survivorship scales consist of 73 items. CONCLUSIONS: The QLQ-SURV100 has been developed to assess comprehensively the HRQOL of disease-free cancer survivors. It includes essential and optional scales and will be validated further in an international phase IV study. IMPLICATIONS FOR CANCER SURVIVORS: The availability of this questionnaire will facilitate a standardized and robust assessment of the HRQOL of disease-free cancer survivors.

Integrating nurse-facilitated advance care planning for patients newly diagnosed with advanced lung cancer.

BACKGROUND: Advance care planning (ACP) is well recognised as an important component of palliative care. However, there is still a need to explore ways in which it can become a part of routine practice, ensuring a timely and person-centred discussion. OBJECTIVES: To explore patients newly diagnosed with advanced lung cancer and their family members' experiences of engaging in a person-centred and structured ACP discussion facilitated by palliative care nurses in an outpatient oncology clinic at the University Hospital of Iceland. METHODS: An exploratory qualitative design employing semi-structured interviews and thematic analysis. The intervention included a structured ACP discussion, aided by a booklet. RESULTS: Key themes emerged describing families' and patients' experiences and highlighted that the timing and approach of the ACP discussion was appropriate and helpful, even though the discussion was sensitive and difficult. Using a routine approach with a flexible structure normalised the discussion and made it easier for the patients to take the lead in the discussion. CONCLUSIONS: ACP discussion can be part of an integrated palliative care and oncology service if implemented in a systematic way.

The effectiveness of the Pain Resource Nurse Program to improve pain management in the hospital setting: A cluster randomized controlled trial.

BACKGROUND: The Pain Resource Nurse program is a widely disseminated, evidence-based, nursing staff development program, designed to improve pain management in hospitals. The program has shown promising results, but has never been tested with a rigorous research design. OBJECTIVES: Our objective was to test the effectiveness of the Pain Resource Nurse program. Hypothesized outcomes included improvements in nurses' knowledge, attitudes, and assessment practices, and in patients' participation in decision-making, adequacy of pain management, pain severity, time spent in severe pain, pain interference, and satisfaction. DESIGN: Cluster randomized controlled trial. SETTING: A 650-bed university hospital in Iceland Participants: The sample consisted of a) patients ≥18 years of age, native speaking, hospitalized for at least 24h, alert and able to participate; and b) registered nurses who worked on the participating units. METHODS: Twenty three surgical and medical inpatient units were randomly assigned to the Pain Resource Nurse program (n=12) or to wait list control (n=11). The American Pain Society Outcome Questionnaire and the Knowledge and Attitudes Survey were used to collect data from patients and nurses respectively. Baseline data (T1) for patients were collected simultaneously on all units, followed by data collection from nurses. Then randomization took place, and the Pain Resource Nurse program was instituted. Ten months later, follow up (T2) data were collected, after which the nurses on the control group units received the Pain Resource Nurse program. RESULTS: At baseline, data were collected from 305 of the 396 eligible patients and at follow up from 326 of the 392 eligible patients, a 77% and 83% response rate respectively. At baseline, 232 of 479 eligible nurses responded and at follow-up 176 of the eligible 451 nurses responded, a 49% and 39% response rate, respectively. A nested mixed model analysis of covariance revealed that the intervention was successful in changing pain assessment practices, with pain assessment using standardized measures increasing from 13% to 25% in the intervention group while decreasing from 21% to 16% in the control group. None of the other hypothesized improvements were found. CONCLUSIONS: The Pain Resource Nurse program was successful in improving nurses' use of standardized measures for pain assessment. No effects were found on patient outcomes; pain was both prevalent and severe at both time points. Only minimal improvements were noted in response to this evidence-based staff development program. Changes in pain management practices remain a challenge in clinical settings.

Changes in attitudes, practices and barriers among oncology health care professionals regarding sexual health care: Outcomes from a 2-year educational intervention at a University Hospital.

PURPOSE: To examine the attitudes, practices and perceived barriers in relation to a sexual health care educational intervention among oncology health care professionals at the Landspítali-National University Hospital of Iceland. METHODS: The design was quasi experimental, pre - post test time series. A comprehensive educational intervention project, including two workshops, was implemented over a two year time period. A questionnaire was mailed electronically to all nurses and physicians within oncology at baseline (T1, N = 206), after 10 months (T2, N = 216) and 16 months (T3, N = 210). RESULTS: The response rate was 66% at T1, 45% at T2 and 38% at T3. At all time points, the majority of participants (90%) regarded communication about sexuality part of their responsibilities. Mean scores on having enough knowledge and training, and in six of eight practice issues increased significantly over time. Overall, 10-16% reported discussing sexuality-related issues with more than 50% of patients and the frequency was significantly higher among workshop attendants (31%) than non-attendants (11%). Overall, the most common barriers for discussing sexuality were "lack of training" (38%) and "difficult issue to discuss" (27%), but the former barrier decreased significantly by 22% over time. CONCLUSIONS: The intervention was successful in improving perception of having enough knowledge and training in providing sexual health care. Still, the issue remains sensitive and difficult to address for the majority of oncology health care professionals. Specific training in sexual health care, including workshops, should be available to health care professionals within oncology.

Psychometric Properties of the Icelandic Version of the Revised Edmonton Symptom Assessment Scale.

CONTEXT: The Edmonton Symptom Assessment Scale (ESAS) is a symptom assessment tool commonly used in both research and clinical practice. A revised version of the tool (ESAS-r) was published in 2011. OBJECTIVES: To evaluate the psychometric properties and feasibility of the Icelandic version of ESAS-r. METHODS: The study was cross-sectional, and 359 cancer patients were screened for participation at inpatient and outpatient settings. The ESAS-r, M. D. Anderson Symptom Inventory (MDASI), demographic and feasibility questions were completed by 143 patients. The psychometric properties assessed for ESAS-r were internal consistency (Cronbach alpha) and concurrent validity (Pearson correlation). RESULTS: Reliability analysis of the ESAS-r showed good internal consistency (Cronbach alpha = 0.85). Validity analysis showed significant moderate-to-strong correlations between seven matching symptom scores on the ESAS-r and MDASI, ranging from r = 0.64-0.86. The majority of patients rated both tools easy to understand, but on the whole, significantly more patients found ESAS-r easier to complete and preferred its use over the MDASI. CONCLUSION: The Icelandic version of ESAS-r is a valid and reliable tool for symptom screening in Icelandic cancer patients in both inpatient and outpatient settings.

Pain and other symptoms and their relationship to quality of life in cancer patients on opioids.

PURPOSE: The purpose of this study was to assess pain, other symptoms and QOL, and the relationship between these variables, among cancer patients on strong opioids. METHODS: The study was cross-sectional, descriptive, and correlational. A convenience sample of 150 cancer patients, ≥18 years, all on strong opioids for ≥ 3 days was recruited. RESULTS: The mean (SD) age was 64.7 (12.7) years, and 59 % were women. Mean (SD) time from cancer diagnosis was 36.3 (55.1) months. The median number of symptoms was 9, range 1-16 and the mean (SD) severity was 1.9 (0.5) on a 1-4 scale. Pain was one of the most prevalent (90 %) and severe symptoms with a mean (SD) of 2.56 (0.9). Number of symptoms explained 25.8 % of the variance in QOL, adjusted for age and sex. Another model, also adjusted for age and sex, showed that pain, fatigue, insomnia and depression, explained 33.6 % of the variance in QOL. CONCLUSIONS: The symptomatology in this study was similar to studies on patients with advanced cancer. QOL was associated with the number of symptoms patients experience and individual symptoms, notably fatigue and pain. Despite the use of strong opioids, pain was both common and severe, suggesting under-treatment. Pain and other symptoms need to be assessed and managed in order to improve patients' QOL. Special attention needs to be paid to multisymptom management in patients on opioids.

Family members of cancer patients: Needs, quality of life and symptoms of anxiety and depression.

BACKGROUND: Family members of cancer patient's have multiple needs, many of which are not adequately met. Unmet needs may affect psychological distress and quality of life (QOL). The purpose of this study was to assess needs and unmet needs, QOL, symptoms of anxiety and depression, and the relationship between those variables in a large sample of family members of cancer patients in different phases of illness. MATERIAL AND METHODS: Of 332 family members invited to participate, 330 accepted and 223 (67%) completed a cross-sectional, descriptive study. Data was collected with the Family Inventory of Needs (FIN), Quality of Life Scale (QOLS) and the Hospital Anxiety and Depression Scale (HADS). RESULTS: Of 20 needs assessed the mean (SD) number of important needs and unmet needs was 16.4 ± 4.3 and 6.2 ± 5.6, respectively. Twelve important needs were unmet in 40-56% of the sample. The mean number of unmet needs was significantly higher among women than men, other relatives than spouses, younger family members, those currently working and those of patients with metastatic cancer. QOL was similar to what has been reported for healthy populations and cancer caregivers in advanced stages. The prevalence of symptoms of anxiety and depression was high (20-40%). Anxiety scores were higher among women than men and both anxiety and depression scores were highest during years 1-5 compared to the first year and more than five years post diagnosis. There was a positive relationship between number of important needs and QOL, and between needs met and QOL. Additionally, there was a significant relationship between anxiety and unmet needs. Finally, there was a significant relationship between QOL and symptoms of anxiety and depression. CONCLUSION: The results support the importance of screening needs and psychological distress among family members of cancer patients in all phases of illness.

Quality of life and symptoms of anxiety and depression of patients receiving cancer chemotherapy: longitudinal study.

The overall survival gain of cancer chemotherapy is estimated to be small, and some claim that it rarely improves quality of life (QOL). The purpose of this population-based study was to describe QOL and symptoms of anxiety and depression, over time, in a group of Icelandic cancer patients receiving chemotherapy. Quality of life was measured with the Icelandic version of Cancer Rehabilitation Evaluation System, Short Form (CARES-SF), and symptoms of anxiety and depression, with the Icelandic version of Hospital Anxiety and Depression Scale (HADS). Enrolled into the study were 144 patients, 90 women and 54 men; mean (SD) age was 55 (12.1) years. Although QOL was found relatively good during the period of chemotherapy, it was significantly worse after 3 and 6 months compared to baseline. Quality of life was found worst in the sexual and physical domains. At all time points, a significant association was found between symptoms of anxiety and depression and QOL with those reporting symptoms of either anxiety or depression experiencing worse QOL. The good QOL found during the period of chemotherapy is a positive finding. The results, however, call for an intense assessment, over time, of physical symptoms, anxiety, and depression, as well as sexuality issues.