Maren Galushko

Determinants and implications of cancer patients' psychosocial needs.

Goals of workCancer patients often experience distress. However, the majority of newly diagnosed patients gradually adapt to the crisis. When symptoms of distress and anxiety persist over months, patients require psychosocial support. The aim of the present study was to determine the proportion of cancer patients who indicate the need for psychosocial support and to identify sociodemographic, psychological and illness-related factors predicting the need for psychosocial support in a German sample.Materials and methodsThe cross-sectional retrospective study was administered to 710 cancer patients who had been inpatients at the University Hospital of Cologne. The response rate was 49.5%. Patients suffering from bronchial, oesophageal, colorectal, breast, prostate and skin cancer participated in the study. The severity of depressive symptoms was assessed using the German version of the Major Depression Inventory. The level of anxiety was assessed with the state subscale of the German version of the State-Trait Anxiety Inventory. To measure the functional aspects of health-related quality of life, the scales “physical functioning”, “role functioning”, “emotional functioning”, “cognitive functioning” and “role functioning” of the European Organisation for Research and Treatment of Cancer QLQ-C30 Questionnaire (EORTC QLQ-C30) were used.Main resultsOf the cancer patients, 18.9% indicate an unmet need for psychosocial support and 9.5% are actually using psychosocial services. In a multiple logistic regression, significant indicators of the need for psychosocial support are gender [p = 0.014; standardised effect coefficient (sc) = 1.615] and emotional functioning (p < 0.001; sc = 1.533). The estimated model has a specificity of 92.2% and a sensitivity of 54.0%.ConclusionAlmost a third of the cancer patient population indicates an unmet need for psychosocial support or is actually using psychosocial services. Emotional functioning is a central predictor of the requirement for psychosocial support. Women are emotionally more affected than men and need more psychosocial support. The prognostic validity of the severity of depression and anxiety is limited.

Unmet needs of severely affected multiple sclerosis patients: The health professionals’ view

Background: Research has only started recently to specifically concentrate on the group of patients severely affected by multiple sclerosis (MS). Aim: The aim of this study was to assess the perception on patients’ unmet needs by healthcare professionals. Methods: Focus groups and expert interviews were recorded, transcribed verbatim and analysed by qualitative content analysis. Results: Unmet needs were identified in four main categories (‘support from family/friends’; ‘healthcare services’; ‘managing everyday life’; ‘maintaining biographical continuity’). Whereas physicians assessed most unmet needs in the category ‘healthcare services’, nurses and social workers focussed on unmet needs in the categories ‘support from family/friends’ and ‘maintaining biographical continuity’. Although the study focused on unmet needs of patients, professionals also voiced their unmet needs when caring for these patients. The group of professionals identified more subcategories than patients and included unmet needs of relatives. Conclusion: Adding professionals’ perspective to that of patients is essential to gain a holistic view on patients’ unmet needs and to further optimize their care. The perspective of palliative care might contribute to meet unmet needs of severely affected MS patients.

Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study

In a qualitative study reported by Olav Lindqvist and colleagues, the range of nonpharmacological caregiving activities used in the last days of a patients life are described.

Quality indicators for care of cancer patients in their last days of life: literature update and experts' evaluation.

BACKGROUND Quality indicators (QIs) are needed to monitor and to improve palliative care. Care of patients in the last days of life is a discrete phase of palliative care and therefore specific QIs are needed. This study aimed to identify and evaluate current QIs against which to measure future care of patients in the last days of life. METHODS To identify QIs for patients in the last days of life an update of the literature and national guidelines was conducted. Subsequently, an international panel of palliative care experts was asked to evaluate the identified QIs: how well they describe care and how applicable they are for care in the last days of life. Also additional QIs were asked. RESULTS In total, 34 QIs for care in the last days were identified in the literature and guidelines. The experts (response rate 58%) agreed with seven QIs as being good descriptors and applicable: concerning a home visit for the family following a patients death, the presence of a dedicated family room, limited patients receiving chemotherapy, limited need for pain control, gastrointestinal symptoms, and communication from professional to patient and family. The experts also suggested 18 additional topics for QIs for the last days of life. CONCLUSION Currently no definite set of QIs exist to describe quality of care of patients in their last days of life. New QIs that are focused on care for patients in their last days of life, their relatives, as well as their professional caregivers are needed.

Barriers to using psycho-oncology services: a qualitative research into the perspectives of users, their relatives, non-users, physicians, and nurses

PurposeThe present explorative study was designed as a qualitative evaluation of the psycho-oncology services (POS) available at a psycho-oncology institution (POI) in Germany. The study focused on barriers to using these services.MethodsSeven focus groups and five complementary individual interviews were conducted with POS users, their relatives, and POS non-users from a German POI, as well as with oncology physicians and nurses from an affiliated hospital. The focus groups and individual interviews were audiotaped and fully transcribed. Data were analyzed using the documentary method.ResultsFour utilization barriers were identified: (1) patients’ and physicians’ information deficits about POI and POS, (2) patients’ and physicians’ subjective norms regarding POS, (3) lack of organizational and therapeutic integration of POI and POS into routine oncology care on the ward, and (4) specific characteristics of cancer patients. The most important finding was that lack of organizational and therapeutic integration of POS in routine oncology care on the ward might have a lasting, negative effect on patients’ and physicians’ information deficits and subjective norms. Furthermore, the identified utilization barriers seem to be a multi-causal problem with complex interdependencies.ConclusionBased on these results, the organizational and therapeutic integration of POS in routine oncology care on the POI ward appears to be a useful tool in offering widely accessible therapies and providing patients with concise, straightforward information via different channels, such as personnel, brochures, and the Internet. Nevertheless, the results should be interpreted tentatively, due to the explorative character of this study.

Multiple sclerosis and palliative care - perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study.

BackgroundIn Germany, patients severely affected by Multiple Sclerosis (MS) do not routinely come into contact with palliative care, even if possibly beneficial. This study was aimed at investigating how severely affected MS patients and their health professionals perceive palliative care to determine how to better approach these patients in Germany about this topic.Methods15 patients feeling severely affected by MS and 23 health professionals experienced with MS patients (3 social workers, 7 nurses, and 13 physicians) in both in-/outpatient and rural/ urban settings participated in this qualitative study in Germany. Semi-structured interviews (patients, health professionals) and focus groups (health professionals) were conducted, transcribed verbatim and analyzed via qualitative content analysis.ResultsMS patients were mostly unfamiliar with the term “palliative care” or were aware of it only in relation to cancer and dying. They did not view it as relevant to themselves. Health professionals predominantly associated palliative care with dying cancer patients, if familiar with it at all. Most physicians doubted its relevance for neurological patients and denied MS as a cause of death. Nevertheless, most felt they already offered their patients sufficient palliative care, or thought that it could not meet MS patients’ complex needs. Most nurses and social workers recognized deficits in existing care structures and regarded palliative care as an opportunity for MS patients.ConclusionMS patients’, and health professionals’ restricted, death-associated awareness of palliative care leads to discomfort, fear or rejection of this idea. Therefore, a defined concept of palliative care emphasizing opportunities for severely affected MS patients and considering early integration should be spread throughout the German MS community as an additional layer of support for this patient group.

End-of-life research on patients' attitudes in Germany: a feasibility study

IntroductionSo far, hardly any experience exists whether end-of-life research on patients’ attitudes towards hastened death in Germany is feasible and how it is perceived by the patients.Materials and methodsDuring the initial phase of a validation study of the German version of the Schedule of Attitudes towards Hastened Death, we documented reasons for non-inclusion.Results and discussionOf 124 patients seen on the participating palliative care units, 18 (15%) were finally included in the study. Reasons for non-inclusion were mainly due to the clinical status of the patients; the German specific history of involuntary euthanasia during the Nazi regime did not prevent patients to participate.ConclusionWe conclude that end-of-life research in Germany is indeed feasible, however, faces difficulties similar to the international experience.

Feeling severely affected by Multiple Sclerosis: What does this mean?

Background: The situation for people feeling severely affected by Multiple Sclerosis (MS) remains largely unexamined and the term ‘severe MS’ is not clearly defined. Aim: Our study describes this sub-group of patients utilizing exclusively a subjective inclusion criterion to analyse their reasons for feeling severely affected and document their perceived unmet needs. Design: A questionnaire with open- and closed-ended items addressing only patients feeling severely affected was sent out nationwide. Expanded Disability Status Score (EDSS) and subjectively severe affectedness were analysed for correlation. After dichotomizing both scores by a median split, the answers were allocated to these groups and tested for significant differences. Setting/participants: 1,110 questionnaires were analysed regarding the closed-ended questions while a subsample of 40% (n = 445) was analysed regarding the open-ended questions. Average age of participants was 51.87 years. Average time since diagnosis was 16.6 years. Main course of the disease was secondary progressive (35.5%). Results: The most frequently mentioned reasons for feeling severely affected were lack of mobility (56.4%) and fatigue (27.4%). Significant percentages for unmet needs were seen in the categories of funding services (31.0%), better social integration (24.7%) and medical support (25.2%). A significant correlation was observed between EDSS and subjectively felt affectedness (p ≤ 0.01). Motor disorders explained differences in patient needs behind a higher EDSS score; higher severe affectedness referred to other issues like dependency and immobility. Conclusions: EDSS is insufficient for usage as the sole instrument for measuring severe affectedness as it does not take into account other potential reasons. Complex patient needs necessitate multi-professional care as offered by palliative medicine.

A palliative care hotline for multiple sclerosis: A pilot feasibility study

OBJECTIVE Research findings suggest that patients severely affected by multiple sclerosis benefit from palliative care. Our objectives were to (1) implement a pilot palliative care counseling hotline for severely affected multiple sclerosis patients and their caregivers in order to connect them to palliative care, and (2) evaluate its preliminary feasibility through a pilot study. METHOD The hotline was designed in cooperation with the local state association of the German Multiple Sclerosis Society and based on a review of the literature. The initial study setting for the hotline was the broader region of the cities Cologne and Bonn in Germany. The hotline was introduced through a magazine published by the German Multiple Sclerosis Society and leaflets sent to local healthcare providers. Calls were conducted using a semistructured interview guide and documented by a standardized case report form. Measures to assess feasibility were both quantitative (e.g., number of calls) and qualitative (e.g., criteria for eligibility for palliative care). RESULTS During its pilot year, the hotline received 18 calls. Some 15 callers were included in the analysis, and 10 of these 15 were deemed eligible for palliative care due to such criteria as medical characteristics, care or nursing conditions, caregiver strain, and concerns regarding death and dying. Access to palliative care services could be provided for all 10 callers. SIGNIFICANCE OF RESULTS Based on our pilot feasibility study, the hotline seems to be a valuable service for patients severely affected by multiple sclerosis (MS) and their caregivers in order to gain information about and access to palliative care. It will be extended on a nationwide scale through a grant of the German Multiple Sclerosis Society. Awareness of the hotline needs to be enhanced in order to attract and support a significant number of new callers.

Issues of "life" and "death" for patients receiving palliative care—comments when confronted with a research tool

PurposeTo be able to study the desire for hastened death (DhD) in patients receiving palliative care, research tools reflecting the thoughts of patients are needed. In order to better understand what issues of “life” and “death” mean to patients receiving palliative care in Germany, we analysed their spontaneous comments during a validation study of the German version of the Schedule of Attitudes Towards Hastened Death.MethodField notes and transcripts of 39 interviews were analysed by thematic analysis.ResultsField notes from 32 patients were related to differentiating either an acute or a non-acute DhD. Furthermore, the patients’ comments were categorized and the distribution of codes analysed, leading to three types of comments: (a) longing for life excluding a hastened death, (b) wanting to live on, but perceiving death as an option, and (c) longing for death, but struggling for life.ConclusionThe existing construct of an increased DhD may benefit from a further differentiation between “non-acute” and “acute.” In addition, it could be helpful to conceptualize “will to live” and “desire for death” not as polarities from one dimension (two sides of the same coin), but to think them as two independent dimensions.