Facing life-threat during youth: a qualitative study on challenges, coping, and needs among adolescents and young adults with cancer.

PURPOSE: While the unique situation of adolescents and young adults with cancer (AYAs) has become the focus of research and clinical practice, little is known about how they deal with the threat to life at a curative stage. The aim of this study was to obtain insight into the challenges, coping strategies, and needs of AYAs regarding the life-threatening nature of their diseases. METHODS: Face-to-face in-depth interviews were conducted with patients who were 18-39 years old at diagnosis. The interviews took place 2-5 years after their diagnosis. Patients who were still undergoing treatment or who were suspected of recurrence were excluded. Interviews were transcribed verbatim and analyzed using qualitative content analysis. RESULTS: Fifteen patients (mean age 27.33 years, nine females) were interviewed in a large comprehensive cancer center in Germany. Before diagnosis, AYAs had not faced their own mortality and had little experience with cancer. The sudden confrontation with a life-threatening disease and therapy, as well as experiencing the death of other AYAs, challenged them. Fear, particularly regarding recurrence and death, and the loss of trust in their own bodies were the major emotions that continued to limit them even after the end of treatment. For mothers, concern of leaving their young children alone was paramount. Coping strategies frequently mentioned were hope, avoidance, self-soothing, and valuing the experience as a chance. Health care professionals were expected to be reassuring, motivating, and open and to provide honest information based on individual and current needs. CONCLUSION: AYAs appear to cope with life-threats similarly to older patients but have additional unique challenges, including inexperience with life-threatening diseases and responsibility for young children. More research is needed in this area, although it is already evident that AYAs need honest and reassuring communication regarding the life-threat during any curable phases of their disease. Trial registration number DRKS00030277; September 27, 2022 (German Clinical Trials Register).

Access to End-of Life Parkinson's Disease Patients Through Patient-Centered Integrated Healthcare.

Background: Palliative care in Parkinson's Disease (PD) patients considerably differs from palliative care in oncology patients. Integrated care models are a concept to support patients and improve management of PD symptoms. However, it is not known if the access to PD patients at the end of life can be achieved through integrated care models. Aim: To analyze an integrated model of care for PD patients with the aim to identify if this integrated model of care has access to PD patients at the end of life. Material and Methods: The Cologne Parkinson's network was designed as a randomized, controlled prospective clinical trial in order to increase quality of life of PD patients. This innovative model of care integrated a neurologist in private practice, a movement disorder specialist of the University Hospital and a PD nurse. Mortality rates of PD patients during the study period of 6 months were registered and compared with mortality rates of the general population of Germany according to the Federal Statistical Office of Germany. The retrospective post-hoc analysis was conducted after completion of the initial study at the University Hospital and neurologists' practices in the greater area of Cologne, Germany. Eligible patients had a diagnosis of idiopathic PD and were aged 25-85 years. Results: Parkinson's Disease patients in this trial had an even slightly lower mortality rate as the general population (1.66 v. 2.1%). These results are contradictory and speak for a substantial proportion of late-stage disease patients, who have not been adequately included in this study or have been better treated within this trial. The mean disease duration of patients in this study was around 6 years which resembles the lower range of the mean disease duration at death of PD patients in general. Conclusions: The results of our post-hoc analysis show, that accessing PD patients in the last phase of their disease is extremely difficult and nearly fails in spite of an integrated care approach. Reasons for poor access and loss of follow-up at the end of life have to be identified and care models for PD patients until the end of life should be developed urgently.

Barriers and approaches to the successful integration of palliative care and oncology practice.

As management of patients with cancer is evolving, an increased focus is being placed on individualized patient-centered care. Early integration of palliative care into the overall management of patients with cancer can help achieve this paradigm shift. Despite recommendations for earlier integration of palliative care by national and international societies, several barriers remain to achieving this goal. Survey studies have indicated a significant need for increased education regarding palliative care for both medical undergraduates and postgraduate physicians. Key issues in the early integration of palliative care include relationship-building across multiple health systems and specialties; development of a standardized definition of palliative care, making clear that it should be fully integrated with cancer-directed therapy; identification of physician and nonphysician champions; standardization of tools for patient assessment; education programs designed to meet the needs of health care professionals; and ongoing evaluation to assess program benefits and limitations.

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.

Recommending early integration of palliative care - does it work?

BACKGROUND: In 2006, our comprehensive cancer center decided to implement early integration (EI) of palliative care (PC) by (a) literally adopting the WHO definition of PC into cancer care guidelines and (b) providing a PC consulting team (PCST) to provide EI on in- and outpatient wards. The experience with this approach was assessed to identify shortcomings. METHODS: A retrospective systematic chart analysis of a 2-year period was performed. RESULTS: A total of 862 patients were treated (May 2006-April 2008). Many patients consulted by the PCST for the first time were already in a reduced performance status (ECOG 3 & 4: 40%) or experiencing burdening symptoms (i.e., dyspnoea 27%). After the first year (period A; "getting started"), the overall prevalence of symptoms identified on first PC contact decreased from seven to three, (p < 0.001) as well as surrogate measures for advanced disease (i.e., frailty: from 63% to 33%; CI: [-36%; -23%], p < 0.001). CONCLUSION: Surrogate measures (symptom burden, performance status) indicate that PC was integrated earlier in the course of the disease after a 1-year phase of "getting started" with EI. Yet, the WHO recommendation alone was too vague to successfully trigger EI of PC. Therefore, the authors advocate the provision of disease specific guidelines to institutionalize EI of PC. Such guidelines have been developed for 19 different malignancies and are presented separately.

Standardizing integration of palliative care into comprehensive cancer therapy--a disease specific approach.

BACKGROUND: Our comprehensive cancer centre adopted the WHO recommendation literally in the cancer care guidelines to implement the early integration (EI) of palliative care (PC). Evaluation of the first 2 years of this approach revealed that this guideline was too vague to trigger EI. OBJECTIVE: As a consequence, an interdisciplinary working group was set up to propose and implement a more effective concept. METHODS: An interdisciplinary (PC, oncology, radiotherapy, etc.) working group identified the need to (a) specify the timing of EI and (b) specify PC assignments by (c) providing more clear cut semantic and clinical definitions. As a result of repeated discussion in the different interdisciplinary working groups in charge of developing and consenting a once-yearly update of treatment guidelines [standard operating procedure (SOP)] for each malignancy, the need for disease-specific EI SOPs was identified. RESULTS: SOPs were developed for 19 malignancies (a) to identify a disease-specific point in each disease trajectory to initiate EI ("green flags") and to provide (b) a clear delineation and semantic differentiation of PC assignments ["palliative care" vs. "supportive" or "palliative therapies" ("green" vs. "red flags")]. DISCUSSION: To date, ASCO and WHO recommendations for EI lack detailed information about timing and infrastructure. The guidelines presented here aim to provide the missing information by reporting our developed and consented interdisciplinary guidelines for EI. CONCLUSION: With this concept, the authors provide a framework for realizing EI and hope to initiate a discussion about specific recommendations for EI.

Palliative care needs of chronically ill nursing home residents in Germany: focusing on living, not dying.

OBJECTIVES: To explore the palliative care needs of nursing home residents in Germany who had not yet entered the dying phase. METHODS: Semi-structured interviews were conducted with a sample of nine residents suffering from chronic disease or frailty. The interviews were audio-recorded, transcribed, and analysed using a grounded theory approach. FINDINGS: The residents described multidimensional needs, which were categorized as 'being recognized as a person', 'having a choice and being in control', 'being connected to family and the world outside', 'being spiritually connected', and 'physical comfort'. They emphasized their desire to control everyday matters. Physical impairment was a problem, especially when independence was threatened, e.g. by immobility or a reliance on pain killers. CONCLUSION: The desire for self-determination is key when designing and evaluating primary and palliative care programmes for nursing homes. Early integration of palliative care can improve the quality of life of chronically ill residents.

Specifying WHO recommendation: moving toward disease-specific guidelines.

INTRODUCTION: The World Health Organization (WHO) explicitly recommends the integration of palliative care (PC) early in the disease trajectory as part of the WHO definition of PC. Our comprehensive cancer center decided: (1) to include this recommendation in the administrative directives for principles of cancer care and (2) to establish a PC hospital support team. The evaluation of this approach revealed that patients with lung cancer still received PC rather late in the course of the disease. Therefore, we decided to additionally develop disease-specific standard operating procedures (SOPs) to try to overcome these deficiencies. The first SOP was completed for patients with lung cancer. STANDARD OPERATING PROCEDURE (Consensus SOP): Specifically, the SOP states that: "Specialized PC is recommended regularly for all lung cancer patients without curative treatment options, specifically patients with (i) metastasized and inoperable or (ii) locally advanced and inoperable or (iii) relapsing lung cancer. Integration of PC is recommended simultaneously to starting tumor-specific therapy. In this context, initial PC should be delivered to the patient at the same place as specific treatment, which is the interdisciplinary outpatient unit of the Center of Integrated Oncology (CIO) or an oncological ward." DISCUSSION: This SOP for the first time presents disease-specific guidelines for PC integration into comprehensive (lung) cancer therapy by (1) defining "green flags" for early integration of PC and (2) recommending PC parallel to initiation of anticancer therapy. Furthermore, clear definitions are provided to delineate PC assignments. Such disease-specific algorithms should be helpful to further reduce uncertainty about the way PC can be integrated early in the course of the disease.

Implementing WHO recommendations for palliative care into routine lung cancer therapy: a feasibility project.

BACKGROUND: The World Health Organization (WHO) explicitly recommends the integration of palliative care (PC) early in the disease trajectory as part of the WHO definition of PC. Our comprehensive cancer centre decided to include this recommendation in the administrative directives for principles of cancer care. The aim of this study was to assess, for patients with lung cancer, (a) at what point in the disease trajectory the patients were first provided PC and (b) whether - over one year - an earlier integration of PC could be achieved. OBJECTIVE: A retrospective systematic chart analysis of a two year period was performed. We assumed that seeing patients relatively early during the course of the illness would be reflected by seeing patients that would be not already (i) in a reduced performance status, (ii) experiencing symptoms that are indicators for advanced disease (e.g., dyspnoea and pain) and (iii) close to death. Therefore, the first PC consultation for every lung cancer patient was analyzed to assess in what physical condition patients receive first PC consultation, what burdening symptoms they already experienced and how long the patients lived after their first consultations. RESULTS: Most patients were already in a reduced physical state, were experiencing burdening symptoms and many died shortly after the first PC consultation. After a one year period, the number of burdening symptoms identified at first PC consultation and the admissions to the in-patient PC was decreased while non-PC physicians increasingly requested PC support for psychosocial interventions. CONCLUSION: Though some degree of development towards a better understanding of PC competencies and the "early integration" approach could be demonstrated, the adoption of the WHO recommendation alone did not suffice to integrate PC into routine cancer care early in the course of the illness. Therefore, the development of disease specific guidelines is advocated by our working group.

Long term survival in anti-Hu associated adult neuroblastoma.

We report on a young lady suffering from adult neuroblastoma and anti-Hu associated paraneoplastic encephalomyelitis (PEM) with a tumour free survival of nine years up to now. Treatment included tumour surgery, radiation, high dose chemotherapy, and stem cell transplantation. Serological testing demonstrated a marked decline in anti-Hu antibody titres under therapy, and subsequent disappearance of the antibody 31 months after second tumour resection.

A cost calculation model for specialist palliative care for patients with non-small cell lung cancer in a tertiary centre.

GOALS OF WORK: Five-year survival of patients with non-small cell lung cancer (NSCLC) is below 15%. Therefore, an early integration of palliative care according to the 2002 WHO definition is indispensable. In this paper, we describe methodical and financial aspects of prospective pricing of palliative care within a concept of integrated care for patients with NSCLC in Germany. MATERIALS AND METHODS: Four structures of palliative care services were defined (hospital support, home care, day care and in-patient care). Prospectively, resource use was estimated, using real cost data from the finance department of the University Hospital. Resource use was forecasted on the basis of operating experience, data of the national core documentation of palliative care patients and recommendations from the European Commission. RESULTS: Expected average hospital support team services were priced at 483 euros and budgeted for 10% (stage 1) to 90% (stage 4) of patients. Home care (60 visits, 4,573 euros) and day-care (5 visits) services were budgeted for between 5% (stage 1) and 30% (stage 4). The resulting prospective reimbursements range from 393 euros (stage 1) to 2,503 euros (stage 4). In-patient care was excluded from the prospective payments and reimbursed separately. CONCLUSIONS: For the first time, global reimbursements covering palliative care hospital support, home care and day care for patients with NSCLC were prospectively calculated and successfully negotiated. The contractual specification of palliative care services may contribute to transparency and quality in cancer care.