Annemie M. Courtens

Requests from professional care providers for consultation with palliative care consultation teams

Goals of workProfessional care providers need a substantial basis of competence and expertise to provide appropriate palliative care. Little is known about the problems professionals experience in their palliative care provision in daily practice or about the nature of the advice and support they request from experts. Our aim was to investigate the extent to which professionals requested assistance from palliative care consultation teams and the reasons behind these requests to trace any gaps they experience in the provision of palliative care.MethodsAs part of a large national palliative care development programme, we studied requests for consultation made by professional care providers over a 2-year period. The requests for consultation were recorded on a specially developed standard registration form and classified according to 11 domains relevant to palliative care.Main resultsProfessional care providers requested 4351 consultations on account of 8413 specific problems in 11 quality-of-life and quality-of-care domains. The distribution of problems over these domains was unbalanced: 42.2% of the specific problems were physical, while the percentages of psychological, pharmacological and organizational problems were 7.7, 12.5 and 12.8%, respectively. In contrast, issues of a spiritual nature or concerned with daily functioning were raised infrequently (1.1 and 0.9%). Details of the specific problems in all the domains are described in the text and tables.ConclusionsThe results of our study form a valid basis on which to develop and implement improvements in palliative care. We recommend that future well-founded policies for palliative care should incorporate palliative care consultation as well as educational and organizational interventions.

Spiritual issues in palliative care consultations in the Netherlands.

Introduction: In the Netherlands, healthcare professionals are able to consult Palliative Care Consultation (PCC) teams about individual patients, for information, support and advice. This study aims to understand which spiritual issues are discussed in these consultations and to determine which factors influence whether they are raised or not. Methods: The national register of the consultations of the PCC teams was analysed for a two-year period. Results: Spiritual issues played a role in 8.4% of palliative care consultations, of which 4.1% were by phone and 18.3% were bedside consultations. Often spiritual issues were raised by the consultant during the exploration of the request from the caregiver; the discipline of the consultant rather than the discipline of the requesting professional or the patient characteristics determined whether or not such issues were raised. The main support given by the consultant was in coaching the professional caregiver on how to address these issues. Discussion: This study demonstrates the important role of PCC team consultants in exploring and identifying the spiritual needs of patients about whom they are consulted. Although continued education in spiritual care for palliative care professionals is essential, PCC team consultants will play an important role in drawing the attention of healthcare professionals to the need to recognize and address the spiritual needs of their patients.

Co-creative development of an eHealth nursing intervention: Self-management support for outpatients with cancer pain

INTRODUCTION Co-creative methods, having an iterative character and including different perspectives, allow for the development of complex nursing interventions. Information about the development process is essential in providing justification for the ultimate intervention and crucial in interpreting the outcomes of subsequent evaluations. This paper describes a co-creative method directed towards the development of an eHealth intervention delivered by registered nurses to support self-management in outpatients with cancer pain. METHODS Intervention development was divided into three consecutive phases (exploration of context, specification of content, organisation of care). In each phase, researchers and technicians addressed five iterative steps: research, ideas, prototyping, evaluation, and documentation. Health professionals and patients were consulted during research and evaluation steps. RESULTS Collaboration of researchers, health professionals, patients and technicians was positive and valuable in optimising outcomes. The intervention includes a mobile application for patients and a web application for nurses. Patients are requested to monitor pain, adverse effects and medication intake, while being provided with graphical feedback, education and contact possibilities. Nurses monitor data, advise patients, and collaborate with the treating physician. CONCLUSION Integration of patient self-management and professional care by means of eHealth key into well-known barriers and seem promising in improving cancer pain follow-up. Nurses are able to make substantial contributions because of their expertise, focus on daily living, and their bridging function between patients and health professionals in different care settings. Insights from the intervention development as well as the intervention content give thought for applications in different patients and care settings.

Self-management support intervention to control cancer pain in the outpatient setting: a randomized controlled trial study protocol.

BackgroundPain is a prevalent and distressing symptom in patients with cancer, having an enormous impact on functioning and quality of life. Fragmentation of care, inadequate pain communication, and reluctance towards pain medication contribute to difficulties in optimizing outcomes. Integration of patient self-management and professional care by means of healthcare technology provides new opportunities in the outpatient setting.Methods/DesignThis study protocol outlines a two-armed multicenter randomized controlled trial that compares a technology based multicomponent self-management support intervention with care as usual and includes an effect, economic and process evaluation. Patients will be recruited consecutively via the outpatient oncology clinics and inpatient oncology wards of one academic hospital and one regional hospital in the south of the Netherlands. Irrespective of the stage of disease, patients are eligible when they are diagnosed with cancer and have uncontrolled moderate to severe cancer (treatment) related pain defined as NRS ≥ 4 for more than two weeks. Randomization (1:1) will assign patients to either the intervention or control group; patients in the intervention group receive self-management support and patients in the control group receive care as usual. The intervention will be delivered by registered nurses specialized in pain and palliative care. Important components include monitoring of pain, adverse effects and medication as well as graphical feedback, education, and nurse support. Effect measurements for both groups will be carried out with questionnaires at baseline (T0), after 4 weeks (T1) and after 12 weeks (T2). Pain intensity and quality of life are the primary outcomes. Secondary outcomes include self-efficacy, knowledge, anxiety, depression and pain medication use. The final questionnaire contains also questions for the economic evaluation that includes both cost-effectiveness and cost-utility analysis. Data for the process evaluation will be gathered continuously over the study period and focus on recruitment, reach, dose delivered and dose received.DiscussionThe proposed study will provide insight into the effectiveness of the self-management support intervention delivered by nurses to outpatients with uncontrolled cancer pain. Study findings will be used to empower patients and health professionals to improve cancer pain control.Trial registrationNCT02333968 December 29, 2014

WHAT KINDS OF CARE DO NEW CANCER PATIENTS NEED? A ONE-YEAR FOLLOW-UP STUDY OF PATIENTS DIAGNOSED IN A DUTCH GENERAL HOSPITAL*

was found concerning primary responsibilities for tasks in the domains of assistance of patients and family and giving information. Less consensus was found concerning tasks on patient education. At the initial stage of disease most patients received home care within one week after hospital discharge. During the year, contacts with professional and informal carers decreased. Social support was also available, although the size of the informal network decreased during the year. Only a few measures were directly related to quality of life. Patients whose quality of life improved (n = 25) were faced with less task consensus between general practitioner and medical specialist, had at baseline fewer professional care providers and received more social support than those whose quality of life worsened or remained unchanged (n = 26). After 12 months however, these patients were more satisfied with the care they received from their general practitioner. It is con cluded that continuity of care as standard practice of health care providers is difficult to achieve and to maintain in non-acute situations that go on for a considerable length of time.