Effectiveness of an intervention to improve supportive care for family caregivers of patients with lung cancer: study protocol for a randomized controlled trial.

BACKGROUND: Family caregivers (FC) often experience higher distress levels than their relative with cancer. Many cancer centers have implemented distress screening programs, but most of them concentrate their efforts on patients, with little attention to their FC. To fill this gap, a pragmatic intervention has been designed to improve supportive care for FC of patients with lung cancer. This article describes the study protocol of a single-center randomized controlled trial to assess its effectiveness. METHODS/DESIGN: A total of 120 lung cancer patients and their FC are randomly assigned to the experimental group (exposed to intervention, N = 60) or to the control group (usual care, N = 60). The intervention includes: (1) systematic FC distress screening and problem assessment near their relative's cancer diagnosis, and every 2 months, (2) privileged contact with an oncology nurse (ON) away from the patient to address FC problems and (3) liaison by the ON with the family physician of FC reporting high distress (thermometer score ≥5/10), or problems relying on FP expertise. In both groups, FC, patient and process-of-care outcomes are measured at baseline and every 3 months, up to 9 months. The primary endpoint is FC distress measured by the Hospital Anxiety and Depression Scale (HADS) and the Psychological Distress Index used in the Quebec Health Survey (PDQHS). Individual interviews with 10 FC and a focus group with the oncology team will be conducted at the study end to further document the effectiveness of the intervention and its impact on quality of life (for FC) and practice organization (for the oncology team). DISCUSSION: This trial will assess the effectiveness of an innovative intervention based on interprofessional collaboration between primary care and oncology care. It targets a population in great need, yet often neglected, and has the potential to clearly improve patient and caregiver experience of cancer care, and reduce the burden of disease. TRIAL REGISTRATION: ClinicalTrials.gov, ID: NCT02531464 . Registered on 15 July 2015.

Assessment of the feasibility and acceptability, and pre-test of the utility of an individualized survivorship care plan (ISCP) for women with endometrial cancers during the transition of the end of active treatment to cancer survivorship.

The transition from the end of active treatment to survivorship holds many challenges for women with endometrial cancer (WEC) and for the organization of health services. The feasibility and acceptability of implementing an individualized survivorship care plan (ISCP) at the end of treatment are documented as potential solutions. The utility of an ISCP on three indicators (SUNS, FCRI, and HeiQ) was pre-tested by comparing two groups of WEC (control and exposed to the ISCP). The WEC exposed to the ISCP had fewer needs, a lesser intensity of fear of cancer recurrence, and better health-related empowerment skills three months after the end of treatment, as compared to the control group. Obstacles of time, resources, and organization were raised. BACKGROUND: The transition from the end of active treatment to cancer survivorship is a time of imbalance and turbulence for women with endometrial cancer (WEC). The transition to survivorship continues to be uncoordinated and the need for information about the side effects to watch for and the health risks is unmet. The implementation of an individualized survivorship care plan (ISCP) is suggested as an information and communication tool that could be a solution for facilitating the transition from the end of treatment to the beginning of survivorship. RESEARCH OBJECTIVE AND METHOD: To assess and document the feasibility and acceptability of implementing an ISCP, qualitative data were gathered from WEC, oncology nurse navigators (ONN), and family doctors. A pre-experimental research design with a non-equivalent control group, an end of treatment (T0), and a three-month follow-up (T1) allowed us to pre-test its utility according to three indicators: (1) overall needs (SUNS); (2) fear of cancer recurrence (FCRI); and (3) empowerment (HeiQ) according to exposure to ISCP (control versus exposed) and to the time of measurement in the transition period (T0 versus T1). RESULTS: The sample was made up of 18 WEC for the group exposed to the ISCP and 13 WEC for the control group, 12 general practitioners, and two ONN. After ONN training, the ISCP completion time varied between 60 and 75 minutes, and the meeting for providing the ISCP lasted 45-60 minutes. The WEC supported the idea that meetings with the ONN and the ISCP were useful in meeting their needs for information and support. The family doctors supported its relevancy in favouring follow-up and better subsequent healthcare management, as well as in reassuring patients and avoiding a sense of abandonment at the end of treatment. Comparing the group exposed to the ISCP versus the control group, fewer reported needs can be observed: information: 35% versus 74%, p = .030; professional and financial: 6% versus 19%, p = .057; access and continuity: 9% versus 25%, p = .078; support: 18% versus 50%, p = .007, emotional: 13% versus 28%, p = .044). Moreover, at T1, empowerment according to the skill and technique acquisition sub-scale shows a higher trend (M = 75.00 (10.21) versus M = 64.06 (10.67), p = .097). The level of fear of recurrence remains above the clinically significant score of 13 for both groups at the two times of measurement. DISCUSSION: The ISCP is an informational tool that seeks to facilitate care-related communication and coordination between specialized and primary care. It is intended to facilitate the transition from the end of treatment to survivorship and survivors' commitment to health-related empowerment behaviours. The feasibility and utility of implementing an ISCP are supported if additional professional, organizational, and financial resources are specified and mobilized.

What to do with screening for distress scores? Integrating descriptive data into clinical practice.

OBJECTIVE: Implementation of routine Screening for Distress constitutes a major change in cancer care, with the aim of achieving person-centered care. METHOD: Using a cross-sectional descriptive design within a University Tertiary Care Hospital setting, 911 patients from all cancer sites were screened at the time of their first meeting with a nurse navigator who administered a paper questionnaire that included: the Distress Thermometer (DT), the Canadian Problem Checklist (CPC), and the Edmonton Symptom Assessment System (ESAS). RESULTS: Results showed a mean score of 3.9 on the DT. Fears/worries, coping with the disease, and sleep were the most common problems reported on the CPC. Tiredness was the most prevalent symptom on the ESAS. A final regression model that included anxiety, the total number of problems on the CPC, well-being, and tiredness accounted for almost 50% of the variance of distress. A cutoff score of 5 on the DT together with a cutoff of 5 on the ESAS items represents the best combination of specificity and sensitivity to orient patients on the basis of their reported distress. SIGNIFICANCE OF RESULTS: These descriptive data will provide valuable feedback to answer practical questions for the purpose of effectively implementing and managing routine screening in cancer care.

The "good" rural death: a report of an ethnographic study in Alberta, Canada.

Much concern has centred on the "good" death since the modern hospice/palliative care movement began, and considerable progress has been made in urban services to promote the good death. Little is known about the perspectives of people who live in rural and remote areas of Canada on the good death and how this good death might be enabled in those areas. This report is of an ethnographic study in rural Alberta involving English-speaking Albertans. An identical study in Quebec will be reported elsewhere. The 2006-07 Alberta study involved 13 interviews with individuals to understand their personal viewpoints or perspectives and how they were shaped by their experiences, followed by focus group discussions in two representative rural communities for additional insights from rural policy-makers and care providers. Four themes in the Alberta data highlight critical elements of the good rural death. These findings are expected to contribute to rural/remote palliative and end-of-life care developments.

A new tool to assess family caregivers' burden during end-of-life care.

A significant challenge in virtually all caregiving studies is the measurement of burden, particularly within the specific context of palliative care. Existing tools in the caregiving field are not specifically designed for palliative care. A new tool, which specifically assesses family caregivers' (FC) burden within the palliative care context, was systematically developed and validated. This paper describes the steps taken to develop this tool and to examine its psychometric properties. The Caregiver's Burden Scale in End-of-Life Care (CBS-EOLC) is a 16-item self-report questionnaire. Internal consistency reliability: Cronbach's alpha = 0.95. Construct validity: Most inter-item associations were consistent with the conceptual framework that emerged from qualitative data analyses. Convergent validity: Interscale correlations: a) Zarit's Burden Interview (BI) = 0.72 (p < 0.01); b) POMS (fatigue) = 0.69 (p < 0.01); d) POMS (vigour) = -0.27 (p < 0.05). Social desirability was tested with the Crowne & Marlowe questionnaire (r = -0.24). Sensitivity: Associations were consistent with patients' functional status (ECOG) and FCs' unmet needs. The CBS-EOLC is a reliable and valid measure available in French and English.

The benefits of a palliative care network: a case study in Quebec, Canada.

This article aims to present the beneficial effects associated with the local implementation of an integrated network in palliative care, as perceived by diverse constituency groups. A case study was conducted in the province of Quebec, Canada, using individual (n=16) and group (n=16) interviews, with a total of 106 participants (i.e. managers and formal and informal caregivers). From a content analysis, two categories of beneficial effects emerged: those associated with professional practice and those with patient services. The most important effects of this organisational initiative were found to be the recognition of the palliative care domain necessitating specialized competencies, an improved interdisciplinary collaboration, and more efficient circulation of information between care settings, as well as improved accessibility, continuity and quality of care and services to patients at the end of life.

Pain assessment and management in critically ill intubated patients: a retrospective study.

BACKGROUND: Little research has been done on pain assessment in critical care, especially in patients who cannot communicate verbally. OBJECTIVES: To describe (1) pain indicators used by nurses and physicians for pain assessment, (2) pain management (pharmacological and nonpharmacological interventions) undertaken by nurses to relieve pain, and (3) pain indicators used for pain reassessment by nurses to verify the effectiveness of pain management in patients who are intubated. METHODS: Medical files from 2 specialized healthcare centers in Quebec City, Quebec, were reviewed. A data collection instrument based on Melzack's theory was developed from existing tools. Pain-related indicators were clustered into nonobservable/subjective (patients' self-reports of pain) and observable/objective (physiological and behavioral) categories. RESULTS: A total of 183 pain episodes in 52 patients who received mechanical ventilation were analyzed. Observable indicators were recorded 97% of the time. Patients' self-reports of pain were recorded only 29% of the time, a practice contradictory to recommendations for pain assessment. Pharmacological interventions were used more often (89% of the time) than nonpharmacological interventions (<25%) for managing pain. Almost 40% of the time, pain was not reassessed after an intervention. For reassessments, observable indicators were recorded 66% of the time; patients self-reports were recorded only 8% of the time. CONCLUSIONS: Pain documentation in medical files is incomplete or inadequate. The lack of a pain assessment tool may contribute to this situation. Research is still needed in the development of tools to enhance pain assessment in critically ill intubated patients.