S. C. C. M. Teunissen

Are anxiety and depressed mood related to physical symptom burden? A study in hospitalized advanced cancer patients

Background : Anxiety and depressed mood are common symptoms in hospitalized advanced cancer patients. It is often presumed that anxiety and depression affect the occurrence and experience of physical symptoms. Purpose : To analyse the relation between anxiety, depressed mood and the presence and intensity of physical symptoms. Patients and methods : Anxiety and depressed mood were assessed in a hospitalized advanced cancer population (n = 79) primarily by the Hospital Anxiety and Depression Scale (HADS), and also by a single-item question `Are you anxious and/or depressed? and by the Edmonton Symptom Assessment System (ESAS). Physical symptoms were assessed by a semi-structured interview and by the ESAS. Results : Thirty-four percent of the patients reported anxiety, 56% depressed mood and 29% both, as assessed by the HADS. The correlations between HADS, the single-item question and the ESAS were low. No association was found between anxiety or depressed mood and the presence of physical symptoms. Patients who were anxious or depressed had higher ESAS scores for insomnia and drowsiness; scores for pain, anorexia, asthenia, nausea and dyspnea were independent of anxiety and/or depressed mood. Conclusion : The relationship between anxiety, depressed mood and the presence and intensity of physical symptoms in hospitalized advanced cancer patients is very limited. Palliative Medicine 2007; 21: 341—346

Telephone consultation in palliative care for cancer patients: 5 years of experience in the Netherlands

Goals of workTo analyze cancer patient-related consultations of a telephone helpdesk (TH) for palliative care over a period of 5xa0years in the region of Utrecht, The Netherlands.Materials and methodsA descriptive analysis was performed of consultations over a period of 5xa0years (2001–2006). The discipline and location of requesting professionals, patient characteristics, reasons for calling, symptoms, palliative care problems and needs for support were registered.Main resultsA total of 1,794 consultations were analyzed. There was an increasing number of consultations during the study period. Of the patients, 51% were male and their median age was 65xa0years (range 0–104). Eighty-four percent were treated at home by their general practitioner. Two thirds of the patients had a life expectancy <4xa0weeks. Most questions referred to pain (49%), delirium (20%), nausea and vomiting (16%) and dyspnea (12%). The median number of symptoms was 1 (0–6). Of the questions, 54% were related to pharmacological problems, 19% to psychological problems and 21% to the organization of care. Of the requesting professionals, 17% asked for support for themselves. Of the consultations, 14% were related to end-of-life issues: palliative sedation (11%) and euthanasia (3%).ConclusionAfter more than 5xa0years, the 24-h telephone consultation service fulfills a need for general practitioners dealing with daily dilemmas in palliative care treatment for cancer patients at home during the last period of their life.

Medical oncology patients’ preferences with regard to health care: development of a patient-driven questionnaire

BACKGROUNDnTo improve quality of care for cancer patients, it is important to have an insight on the patients view on health care and on their specific wishes, needs and preferences, without restriction and without influence of researchers and health care providers. The aim of this study was to develop a questionnaire assessing medical oncology patients preferences for health care based on their own input.nnnPATIENTS AND METHODSnItems were generated using 10 focus group interviews with 51 cancer patients. A preliminary questionnaire was handed out to 681 patients of seven Dutch departments of medical oncology. Explorative factor analysis was carried out on the 386 returned questionnaires (response 57%).nnnRESULTSnFocus group interviews resulted in a preliminary questionnaire containing 136 items. Explorative factor analysis resulted in a definitive questionnaire containing 123 items (21 scales and eight single items). Patients rated expertise, safety, performance and attitude of physicians and nurses as the most important issues in cancer care.nnnCONCLUSIONnThis questionnaire may be used to assess preferences of cancer patients and to come to a tailored approach of health care that meets patients wishes and needs.

Impact of integration of clinical and outpatient units on cancer patient satisfaction

OBJECTIVEnThere is an ongoing drive to measure and improve quality of care. Donabedians quality framework with structure, process and outcome domains provides a useful hold to examine quality of care. The aim of this study was to address the effect of an intervention in hospital structure (integration of three units into one) with the purpose of improving processes (increase meeting, cooperation and communication between professionals and patients) and its effect on the outcome (cancer patient satisfaction).nnnDESIGNnPre-test-post-test.nnnSETTINGnUniversity Medical Center Utrecht, The Netherlands, Department of Medical Oncology.nnnPARTICIPANTSnCancer patients (n = 174, n = 97).nnnINTERVENTIONSnPhysical integration by bringing separately located units (outpatient clinic, day-care clinic, clinical ward) together in one wing of the hospital and adjustments in communication and coordination structures.nnnMAIN OUTCOME MEASUREnPatient satisfaction questionnaire.nnnRESULTSnSatisfaction with care improved for six scales (27%) after integration. Effect sizes (ESs) ranged from 0.36 to 0.80, indicating a small to moderate effect. The most important improvement was found at the day-care clinic on aspects like the degree in which the nurses were informed about a patients situation, privacy, interior design, quality of hospital equipment, sanitary supplies and waiting periods. With regard to continuity and coordination of care, satisfaction increased for five items (28% of items concerning continuity and coordination of care). ESs ranged from 0.42 to 0.75.nnnCONCLUSIONSnIntegration of three oncology units into one unit had a positive impact on care delivery processes and resulted in improved patient satisfaction concerning care and treatment.

Symptoms from treatment with sunitinib or sorafenib: a multicenter explorative cohort study to explore the influence of patient-reported outcomes on therapy decisions

PurposeOptimal long-lasting treatment with sunitinib and sorafenib is limited by dose modifications (DMs) due to adverse events (AEs). These AEs may be underrecognized and their influence on health-related quality of life (HRQL) underestimated. Improved insight into the relationship between AEs and therapy decisions is needed. To improve decision making around managing symptoms and reduce DMs, this study was set up to explore the influence of patient-reported symptoms on therapy decisions.MethodsIn this multicenter cohort study, patient characteristics, reasons for and different forms of used dose modifications, and AEs were prospectively obtained from cancer patients on sunitinib/sorafenib treatment. Used instruments to get insight into AEs were the patient-scored Utrecht Symptom Diary (USD) and the professional-scored Common Terminology Criteria for AEs version 3.0.ResultsMedian total treatment duration in 42 patients was 16xa0weeks. Median time till dose modification was 10xa0weeks. DMs occurred mostly due to multiple mild AEs. By using the USD, a higher prevalence of most AEs was found compared to the literature. Sixty percent of the patients experienced a decreased HRQL due to multiple AEs.ConclusionsBecause severe AEs due to sunitinib/sorafenib treatment seldom occur, it is more important to focus on treating and preventing multiple mild AEs with higher impact on HRQL, when trying to avoid dose modifications. Using patient self-reported measurement methods helps to early recognize symptoms and to differentiate among symptom intensities. This systematic approach might help to achieve the optimal dosing, which might improve PFS and OS.

Patient-reported outcome measures in a pharmacokinetic study with sunitinib, a prospective cohort study

PurposeDuring treatment with tyrosine kinase inhibitors, such as sunitinib, patients experience treatment and/or disease-related symptoms. Although application of patient-reported outcome measures (PROMs) enhances early recognition of symptoms, early clinical trials are focused on symptom severity objectified by the Common Terminology Criteria for Adverse Events (CTCAE) in order to evaluate drug safety and to determine a personalized and/or safe dosage range. To gain insight into patient-reported symptoms in addition to healthcare professional-reported adverse events (AEs), a substudy was conducted in an ongoing pharmacokinetic-guided sunitinib dosing study.MethodsIn patients for whom sunitinib was considered standard therapy or patients with advanced/metastatic tumors for whom no standard therapy was available, patient-reported symptoms and well-being besides healthcare professional-reported AEs were assessed.ResultsTwenty-nine patients were included for analysis. Over 50% of them experienced a decreased well-being, caused by symptoms of mild and moderate intensity. Compared to healthcare professionals, all measured symptoms, with the exception of fatigue and vomiting, were reported statistically significantly more often by patients.ConclusionsApplication of PROMs in early clinical trials on personalized or individualized oral targeted anticancer agents is feasible and enhances early recognition of symptom burden due to multiple CTCAE grade 1–2 AEs, just as pro-active symptom management and effect evaluation of interventions performed. Application of PROMs in these trials might be clinically relevant in obtaining dose-limiting toxicities.

Patient-reported symptoms and stepwise symptom management in patients on epidermal growth factor inhibitors : A retrospective, descriptive cohort study

Adverse events (AEs) of epidermal growth factor inhibitors (EGFRi) influence well-being with a risk to dose modifications (DMs). Hereby, clinical benefit of treatment might be affected. This retrospective cohort study was set up to gain insight into the suitability and added value of a patient-reported outcome measurement tool (PROM), together with a stepwise intervention management plan for EGFRi-related AEs in daily practice. The primary objective was to gain insight into total treatment duration and DMs, and the secondary objective to gain insight into patient-reported symptoms and well-being as well as healthcare professional-reported AEs. Sixty-eight patients on cetuximab and 19 on panitumumab treatment were included for analysis; 69% had squamous cell carcinoma of head and neck (SCCHN) and 26% metastatic colorectal carcinoma. DMs due to AEs occurred in 39% of the patients and dose discontinuations in 22%. Especially anorexia, dysphagia, oral pain and skin changes led to a decreased well-being. In patients on EGFRi, application of PROMs together with a stepwise symptom management plan enhances early recognition of symptom burden, pro-active symptom management and effect evaluation of interventions performed whereby well-being recovers. Since only SCCHN patients discontinued treatment due to AEs, patient-centred care focused on radiotherapy-related AEs, creates opportunities for amelioration.

PROMs from hospital to hospice.

209 Background: Symptom burden in advanced cancer patients (pts) influences quality of life (QoL) and should be leading in advanced care planning for both hospital and hospice populations. The objective is to describe the course of symptomburden in those patients over time.nnnMETHODSnSymptoms were biweekly assessed with the self-assessment tool Edmonton Symptom Assessment System (ESAS; Dutch translation) in a prospective longitudinal study of hospitalized patients and patients admitted to a hospice. Prevalence and intensity data were entered in a web-based database by distinguishing patients into 3 groups regarding the aim of palliative care: tumor palliation, symptom palliation and terminal care.nnnRESULTSn808 pts included, mean age 65 (18-93), 57% female; 224 (30%) pts admitted in the hospice-setting, 584 (70%) in a medical oncology ward. The care aimed 36 % tumor palliation, 59% symptom management, 4% terminal care. Most prevalent symptoms were similar in hospital and hospice: fatigue, anorexia, dry mouth, pain, constipation. The highest clinical relevance (score > 4 on NRS 0-10; 0 = no symptom, 10 = worst symptom) was found in hospital for fatigue (56%), anorexia (54%), constipation (48%), dry mouth (44%), pain (33%). In hospice patients fatigue (88%), dry mouth (66%), anorexia (63%), pain (4%), constipation (40%). In both care settings same national guidelines for symptom management are used as bottom line for interventions. 48% hospital patients scored > 4 for overall wellbeing (0= very good, 10 = very bad) vs 68% in hospice. In the hospice cohort pts are discriminated by prognosis, symptomburden, QoL: > 3 months survival, 2 - 12 weeks, < 2 weeks. Analysis is ongoing, data will be presented at the conference.nnnCONCLUSIONSnThe course of symptom intensity in advanced cancer populations in hospital and hospice setting is quite similar. A combination of general, specialized and expert palliative care competencies are needed during the cancer continuum. Prospective monitoring of patients during the continuum is a methodological and practical challenge.

A38 Bereavement care for relatives by oncology nurses: contact by phone

s and learning outcomes / European Journal of Oncology Nursing 14S1 (2010) S1–S62 S15 Material and Method: The purpose of this study was to encompass the patients’ needs of knowledge regarding how to acknowledge the needs of the children and how to support them. Furthermore we wanted the adults to be aware on the possibilities they could establish in their family. As a method we let the children’s “own voices” be expressed creating a tapestry for the reflexions of the adults. We let the children tell about their experiences and incidents in families, school and among friends, how these experiences and incidents influenced them, and what they wished their parents would do. The project’s seven phases: included teachers, educationalists, social workers, families and children on a weekend stay with lectures and conferences. The objective and the funds used in the phases to inspire the children and let their voices be expressed was: Theatre, rap music, storytelling, speaks, teamwork in the family and a “cupboard for thoughts”. Results and Discussion: The patients indicated that they had had inspiration to acknowledge the needs of their children, and they had become conscious of the possibilities the families encompassed. The patients valued listening to the children’s voices. By vocalising incidents and experiences the children gave their patents wise words to consider when they, the parents, were anxious and unsure as to whether they did the right things. Conclusion: The project shown that families where the mother or father has a diagnosis of cancer, live in a daily setting, where the parents are anxious and nervous for their children’s well-being. The project stated that the parents need help to listen to their children, to support them, and to create the best framework. It was evident, that the children have many wise words and reflections that may be of help for the adults in their efforts. It was also evident that there is no simple solution, and that the solutions must be found within the family with the possibilities it has. We need to take these conditions into consideration with rehabilitation, at the same time they must be taken into account in nursing development skills. A38 Bereavement care for relatives by oncology nurses: contact by phone J.J.M. Vulperhorst, E.J.M. de Nijs, S.C.C.M. Teunissen. University Medical Centre Utrecht, Medical Oncology, Utrecht, The Netherlands Introduction: The nursing team of the department of Medical Oncology of the University Medical Centre Utrecht in the Netherlands, experiences a gap in supportive care for relatives of patients who died on the ward. Relatives, repeatedly, visit the MO ward unexpectedly after the death of a loved one. In contrast with medical oncologists’ there is no structural offer of bereavement support by nurses. Method: An intervention for bereavement support is developed based on a literature search (Pubmed, Cinahl), and interviews in 3 different care settings in which bereavement support is integrated in usual care. Aim of the study: (1) What are the needs and expectations of relatives in bereavement support by nurses; (2) what should the support intervention consist of; (3) what skills do nurses need to carry out the intervention? Six months after implementation of the intervention, it is evaluated on the usability in daily practice for the nursing team. Results: The study shows that many care settings don’t provide structural bereavement support, while half of the relatives wish some kind of aftercare. Most relatives are satisfied with a single contact by phone to evaluate the period on the ward and death of the patient in the hospital. Relatives prefer bereavement follow-up after 2–6 weeks after the death of the patient. Identification of problematic grief is not possible with this kind of support. Basic communication skills developed in the education and daily practice of the oncology nurse are sufficient for bereavement support by telephone when facilitated by a checklist with the content and process of the ‘after-care’ contact. Results of the evaluation (response 83%); Nurses are very positive about the supportive care. They notice the appreciation of the family members for the extra attention. When needed, added information can be given. Assessment by 17 nurses: mark 7.9 (1 out of 10). Conclusion: Telephone bereavement support by nurses turned out to be effective. Implementation has been successful. A checklist for communication seems to be an effective instrument. Outcome evaluation, e.g. satisfaction of the relatives with the support given, is under construction. Scientific Symposium: Sexuality and cancer A39 Sex when you are sick: reclaiming sexual health after cancer A. Katz. Prostate Centre, CancerCare, Winnnipeg, Manitoba, Canada The diagnosis of cancer of any kind has a devastating effect on psychological and emotional well-being. Issues of mortality may be all consuming in the early stages after diagnosis however, with time most people with cancer do manage to return to dealing with normal life issues. One of these is the resumption of sexual functioning. Sexuality in the context of cancer must be viewed within the disease trajectory. A diagnosis precipitates a physical, psychological and emotional crisis. Cancer and the effects of treatments can cause symptoms that alter sexual functioning even though the cancer itself may not have a direct effect on sexual functioning. Sex, once a source of comfort, becomes a source of physical and emotional discomfort when associated with pain or lack of desire. Using case studies and clinical vignettes, the presenter will highlight how the cancer trajectory (diagnosis, treatment and recovery) impacts sexuality and what therapeutic interventions are helpful when treating these patients.