Cancer is emerging as a major problem globally and effective cancer care services are needed to lessen its burden on the community. In Greece, oncology health service provision is not located efficiently, resulting in only few patients receiving high quality care. Furthermore, shortages of health professionals and underdeveloped services such as primary care, home care and palliative care in the Greek NHS have aggravated the problem. The limited resources for healthcare have led to the absence of a national cancer registry, thus the extent of cancer incidence cannot be evaluated effectively. The dissatisfaction of the population regarding the Greek NHS is well established, despite the numerous reforms proposed by consecutive Greek governments. It remains that limited research exists in the area of oncology, especially on cancer services and cancer care. The aim of this study was to identify the key areas of cancer care and services that needed to be developed or improved in Greece and their prioritisation within the Greek healthcare system. Once identified, these areas of improvement could be used in a policy making context for the provision of effective services to cancer patients and might provide areas for further research A new Delphi technique (Q-Delphi) was introduced as an extension of the classical Delphi and implemented in two settings to collect data from a sample of 30 healthcare providers and 30 healthcare users. This was to reduce the potential subjectivity that may be introduced by the researcher in generating themes as an essential part of a successful Delphi outcome. The Q-Delphi of healthcare providers consisted of three rounds while that of the healthcare users was based on two rounds. The response rates for all rounds in both Q-Delphi studies were over 77%. The priorities for healthcare providers were focused on staff shortages, working conditions, pain management, home care, day units and communication. Healthcare users' highest priorities included the provision of and research on effective treatment, lessening the financial costs involved and the organisation of cancer services. Despite the separate Delphi studies, there were areas that both healthcare providers and users identified and prioritised. However, for the areas that both panels shared, there was a significant difference between their prioritisation. The World Health Organisation (WHO) suggestions for controlling cancer were used to triangulate, explain and discuss the results from this study (WHO 2002). The areas identified by healthcare providers and users were within those recommended by WHO. Based on the priorities provided by the participants and the suggestions by WHO, the establishment of a national cancer registry, the employment of nurses in order to develop primary care, home care, day care and palliative care services, education in communication skills and redistribution of the bio-medical technology are recommended in order to reduce the burden of cancer hi Greece. More research is needed to validate the actual level of cancer services provided in Greece. In addition, Q-Delphi is suggested as a valid and objective research method. For the benefit of Greek researchers, copies of documents used in conducting the research are also presented in Greek (Appendices 3 to 13 and 15).

O estudo que se segue é uma proposta de reflexão sobre a programação de saúde para a população usuária do SUS, em especial a assistência oncológica, as sucessivas estratégias político-administrativas e medidas de soluções a serem ofertadas à população portadora de câncer. Percebe-se o desequilíbrio entre a operacionalidade real e a operacionalidade suposta ideal, para dar conta dos casos novos de câncer (CNC)/ano, a atenção à saúde concentrada nos grandes centros urbanos, reflexo de um estímulo a investimentos em saúde direcionados aos centros urbanos, localidades de maior crescimento econômico e social. Objetivando o balanço de uma experiência de programação a partir das necessidades, tomamos como norte o Projeto Expande, para a análise da real assistência em oncologia no país, que se traduz no conjunto: oferta de serviço necessidade de tratamento específico para a população demanda, identificando déficit e necessidade. Nesse sentido, com base na programação e nas informações de produtividade SUS/Brasil, disponíveis no INCA , optamos por acompanhar os dados referentes ao ano 2008, quantificados e analisados, tendo como ponto de partida a estimativa de CNC/ano 2008, parâmetros assistenciais estimativa de necessidade máxima). Este estudo, com esse modelo, objetivou levantar subsídios que supostamente contribuam para o aprimoramento da Política de Atenção ao Câncer, em especial uma Política de Expansão Oncológica para o país. / The study is a proposal for consideration of health programming for the SUS users, in particular, cancer care, successive political and administrative measures strategies and solutions offered to people with cancer. One sees the real imbalance between the operation and operability considered ideal, to account for new cases of cancer (CNC) / year, health care concentrated in large urban centers, reflecting a stimulus to health investments targeted to urban centers, locations of greatest economic and social growth. In order to balance experience from the programming needs, we based ourselves on the Expande Project, for the analysis of real care in oncology in the country, which is reflected in the set: the provision of service - specific treatment for the population - demand, identifying deficits and need. Accordingly, based on the schedule and information productivity - SUS / Brazil, available at INCA - we decided to follow the data for the year 2008, quantified and analyzed, taking as its starting point the estimated CNC / 2008, health care parameters (maximum estimate of need). Based on this model, this study aimed to gather information that presumably contributes to the enhancement of the Cancer Care Politics, especially Oncology Expansion Policy for the country.

This thesis takes as its focus the Maggie’s Cancer Centres exploring for the first time the impact of their designed gardens. This research is situated within the immediate context of Maggie’s ambitions as an organisation and looks closely at their design process. It is also set within the wider debates about the effects of green space on health and the historical context of the restorative garden. By exploring both historical and contemporary examples, it argues that a healthcare garden may be a space for transformation. Using four different Maggie’s gardens as case studies, the research seeks to investigate the role of these outdoor spaces and their impact on users. Through ethnographic and sensory methods, each garden is considered and mapped. It looks at the design brief and the intentions of the designers’, but the core work is an exploration of the experiences of staff and visitors. The focus is on the everyday use of these gardens as well as the design historiography. The experiences of gardens within healthcare are examined in order to expose the ways in which gardens, people, health and care are entwined. Through the qualitative research process this thesis develops a new hypothesis as to how healthcare gardens may operate – offering a new definition for them as “resilient places”. Careful analysis of the data reveals the specific networks and affordances presented by these gardens. The thesis argues, based on the evidence of users, that healthcare gardens can uniquely embrace certain “essences” where essence is defined as conveying a quality or attribute. These garden essences are identified as thresholds, sensory richness, the density of time and homeliness. The thesis also argues that a healthcare garden can provide specific and unique opportunities for care and this, in turn, can enhance the healing ethos of an organisation such as Maggie’s.

Bakgrund: Cancer drabbar årligen mer än 50 000 familjer och när en person insjuknar drabbas alla runtomkring. Cancervård är en stor del av svensk sjukvård och har flera aktörer som patienter, närstående och sjukvårdspersonal. Cancervården innefattar många aspekter som diagnosbesked, behandling och psykosocialomvårdnad samt vilka aktörer som är involverade i de olika faserna och hur de ser på delaktighet. Syfte: Syftet med litteraturstudien var att belysa närståendes upplevelser av delaktighet vid cancervård.Metod: En litteraturstudie baserad på 10 vetenskapliga artiklar med kvalitativ ansats för att få fram ett resultat. De valda artiklarna relevans- och kvalitetsgranskades med hjälp av SBU:s mall för kvalitetsgranskning av studier med kvalitativ forskningsmetodik. Detta resulterade i sex artiklar med hög kvalitet och fyra artiklar av medel kvalitet. Databassökningar utfördes i CINAHL och PubMed. Resultat: Studien gav en bred bild av närståendes upplevelser av delaktighet och resultatet presenteras i fyra kategorier: Kommunikationens betydelse, känsla av otillräcklighet, delaktighet genom stöttning och att bli inkluderad.Konklusion: Närstående är en viktig del i vården av personer diagnosticerade med cancer. Närstående upplever i viss mån att de är inkluderade men att sjukvården bör bli ännu bättre på att inkludera dem. Sjukvården behöver bli bättre på att kommunicera och bli bättre på att se vad närstående behöver. / Background: Cancer affects more than 50 000 families every year and when a person is diagnosed everyone around is affected. Cancer care is a big part of the Swedish health care system and has multiple participants, such as patients, health care professionals and next of kin. Cancer care has many aspects, delivering the diagnosis, treatment and psychosocial care and who participates in what part.Aim: The aim with the literature review was to illuminate the next of kin perception of participation in cancer care.Method: A literature review based on 10 scientific articles with a qualitative approach to get a result. The chosen articles were reviewed for quality with the help of SBU:s reviewing templet. This resulted in six articles with high quality and four articles with medium quality. The database searches were performed in CINAHL and PubMed. Result: The review provided a broad picture of the next of kin experiences of participation and the result is presented in four separate categories: Communication, feeling of inadequacy, participation through support and to be included.Conclusion: Next of kin are an important part of the care of people diagnosed with cancer. Next of kin has a perception of participation to a certain degree, but the health care system needs to be more inclusive of next of kin, they need to improve their communication skills and to see what needs next of kin has.

Background: As a nurse, when caring for children with cancer, you need to offer the best care for the child and in the meantime focus on family centered care in order to meet the thoughts and wishes the family carries. Caring for children with cancer might contain many obstacles and difficulties. Communication, education and to understand one's role as a nurse is important when caring for these children. Aim: To identify nursing experience when caring for children with cancer. Method: A literature overview has been done and ten studies were gathered through the databases PubMed and Cinahl. The analysis of these studies created four categories with associated subcategories. Results: It came through those nurses faced difficulties in pediatric care in different situations. These situations created categories which were: Ethical issues, Education, Cooperation with the family and Nurses emotions and support. Conclusion: Factors found in this study were nurses' experience of lacking the necessary preparation, the need of emotional support and the importance of working close to the families. It is found that nurses felt unprepared for their work and dealing with tough situations. The relationship between the nurse and the patient's family is important to provide high quality care. Nurses expressed the need for support from colleagues and family members in order to grow as a nurse and as a person.

Background: Cancer-related fatigue is one of the most common symptom experienced by cancer patients throughout their cancer trajectory. However, very little effort has been made within many oncology practices to assess this clinical problem and to provide timely nursing interventions to reduce its impact. While there have been tremendous advancements in the treatments of the disease aspects of cancer in term of medicine and advanced technology, basic assessment of related physiological concerns, such as fatigue, have not seen the same progress. Purpose: The purpose of this quality improvement project was to develop an evidence-based cancer-related fatigue assessment guideline and a screening protocol adopted from the National Comprehensive Cancer Network algorithm to assess cancer-related fatigue for oncology patients at their initial visit to the oncology unit toward timely intervention. Theoretical Framework: The ADAPTE collaboration model was used. This is an international framework that provides guidance on guidelines development and modification for healthcare providers. Method: This initiative began with a series of formal and informal conversations with major key stakeholders who were primarily the front-line oncology nurses at the practice unit. Based on the need of the unit, a consensus was reached to modify an existing clinical tool currently used to screen patients for emotional distress and to develop a clinical tool and guideline to screen cancer patient to reduce cancer-related fatigue as well. Outcome and Result: A clinical assessment tool was developed based on the patient population needs and the nursing staff concerns to yield an outcome that met the needs of this patient population. An evidence-based assessment guideline was introduced to key stakeholders and recommendations were made to integrate the new revised guideline into practice. The research department, professional practice, and the performance leadership continue to revise the current protocol to include continuous assessment of cancer-related fatigue into policy and procedure. Conclusion: This quality improvement project once implemented will benefit cancer patients as well as oncology practitioners by use of available resources and evidence-based guidelines to improve nursing practice and patient quality of life.

Indiana University-Purdue University Indianapolis (IUPUI) / Symptom management is the main focus of care for patients living with advanced pancreatic cancer (APC). However, evidence shows that symptom management is far from satisfactory for this population. Poorly managed symptoms have had a profound negative impact on APC patients’ and caregivers’ life. While communicating symptoms with healthcare providers is the first step to achieve effective symptom management, some studies have revealed the poor quality of symptom discussions among cancer patients, their caregivers, and healthcare providers. The purpose of this dissertation was to advance the sciences of nursing, symptom management, and patient/caregiver and provider communication in patients with APC. Chapter two, three, and four represented three sub-studies which addressed three specific aims: (1) synthesizing the current evidence regarding the symptom experience of patients with APC, (2) examining recorded healthcare encounters between patients with APC, their caregivers, and healthcare providers to better understand the symptom experiences of patients with APC as told to their healthcare providers, and (3) developing a typology describing patterns and essential elements of real discussions between APC patients/ caregivers and healthcare providers in regards to symptoms. Specifically, chapter two was an integrative review which synthesized sixteen quantitative studies (n=1630 pancreatic cancer patients) and found that pain, fatigue, and appetite loss were primary and intense symptoms experienced by patients with APC. Chapter three was a qualitative descriptive study which used content analysis to examine 37 transcripts of APC patient/caregiver-provider health encounters originally collected for a larger communication study. This study identified ten major symptom groups often described as intense, distressing, and negatively impacting their quality of life. For chapter four, thematic analysis was used to examine 37 transcripts of APC/giver and provider interactions to develop a typology to describe patterns of interactions in regards to symptoms and symptom management. Eight common patient/caregiver-provider interaction patterns regarding symptoms and symptom management were identified. These typologies can be used to enhance patient/caregiver and provider communication programs to promote patient-centered care and improve symptom management in patients with APC. Findings overall will contribute to effective symptom management as it will deepen our understanding of symptom experience and communication processes. / 2 years

The existing cancer-related disparities among Inuit are rooted in the structural conditions that create health and health care inequities. No comprehensive review currently exists about structural factors that facilitate or hinder Inuit’s access to and experiences with cancer care services in Canada. The overall aim of this scoping review was to synthesize the available published and grey literature on the structural factors that influence cancer care experienced by Inuit in Canada. Guided by the Joanna Briggs Institute (JBI) scoping review methodology, searches were conducted in a number of electronic databases, grey literature sources, and relevant journals. The extracted data were synthesized using thematic analysis and presented using tables and narrative summaries. Quality assessment was performed for each included study on its relevance to Inuit communities. A total of 30 papers were included in this review. The structural factors were identified and described through five categories related to: colonization, as well as health systems, social, economic, and political structures. Addressing the structural barriers that Inuit face in the cancer care trajectory requires a system-wide approach. Thesis results inform health care delivery and nursing practice with the goal of improving health equity for Inuit in cancer care.

Throughout the last decades, evolving treatment-opportunities provide a better chance of cure and thereby a higher percentage of patients is being treated for chronic disease (Robert Koch Institut, 2016). As treatment-toxicity, side effects and disease-derived symptoms remain high, it has become crucial to assesses parameters reflecting patients’ perspective, instead of solely focusing on illness-centered outcomes such as survival or treatment response. During the last decades, Patient-reported outcomes (PROs) are on the rise throughout research and cancer care as a key component to capture a patient’s perspective. This work illustrates the broad framework that PROs can be conducted in. We gathered experience and pioneered a systematic PRO-assessment in routine outpatient care, which continues to be updated. We identified a suitable PRO-based geriatric screening tool to avoid a time and resource consuming comprehensive geriatric assessment. Furthermore, we explored the beneficial effects of a PRO-based tailored intervention on HRQoL and provided effect-size estimations. Assessing PROs yields many benefits throughout the care pathway (Andreassen et al., 2006; Basch et al., 2016; Kofoed et al., 2012; Velikova et al., 2004; Yang et al., 2018) and was shown to be feasible in different entities and treatment setting (Bennett et al., 2016; M. K. Schuler et al., 2016; Strasser et al., 2016; Warrington et al., 2019). As a strikingly large discordance between patients’ and clinicians’ perception of symptoms exists (Atkinson et al., 2016), PROs can increase the accuracy of detection of adverse events and even predict survival (Efficace et al., 2021). Based on these advantages, the EMA and the FDA advocate the use of PROs as endpoints in cancer research (European Medicines Agency, 2016; U.S. Department of Health and Human Services FDA Center for Drug Evaluation and Research et al., 2006). Throughout previous years, methodological progress has been made resulting in elaborated measurement technics such as computerized adaptive testing being applied to PRO-instruments (Petersen et al., 2018, 2020). Clinical usability was increased with development of summary scores, cut-off values and emerging normative data (Giesinger et al., 2016, 2020). Interventions based on PROs are promising (Ishaque et al., 2019; Kotronoulas et al., 2014). Despite this ever increasing body of literature on PRO, a significant number of questions remain unanswered. Firstly, there was scarce knowledge about the benefits of a PRO-based intervention in sarcoma patients as there was limited PRO-data available in this entity. Sarcomas are rare diseases, still accounting for slightly less than 1% of all malignant neoplasia worldwide. The age adjusted incidence ranged from 7.4 per 100.000 men and 6.6 per women in Germany (Ressing et al., 2018). As sarcoma-treatment is improving, side-effects and toxicity remain to occur frequently (Gough et al., 2011; McDonough et al., 2019; Reichardt et al., 2012; Storey et al., 2019; Winnette et al., 2017). Until recently, there was quite limited knowledge about the patient-reported burden in terms of HRQoL, symptoms and psychological distress in patients with STS (Tang et al., 2012). PRO-based interventions yield beneficial effects in different cancer entities. Nevertheless, the effects of a PRO-based intervention in STS-patients was scarcely explored. The YonLife-Study (Publication B, Hentschel et al., 2020) contributes new evidence that a PRO-based intervention yields beneficial effects on HRQoL and suggests a positive, yet non-significant effect on survival. Concerning symptoms, the results of the YonLife-intervention remain far from being encouraging. As effects sizes are available now, RCTs which are powered to a confirmatory purpose could be performed in this population. Secondly, the importance of PROs are emphasized by authorities such as EMA or FDA that emphasize the need to incorporate PRO in scientific studies. Yet during the early 2010s, the actual incorporation of PROs in clinical routine was limited in Germany. We therefore designed and established a routine assessment of PROs (Publication C, (Trautmann, Hentschel et al., 2016) incorporating the automatized calculation, comparison with normative or threshold data and implemented it to our hospital information system. As until recently, feasibility data such for such an intervention is scarce, we collect measures of adherence, required time and barriers reported by staff. For the clinical benefit, the established PRO-assessment is being developed further and expanded to other departments and clinics of our institution. Thirdly, as numbers of geriatric cancer patients rise (Le Saux et al., 2019), older patients continue to be underrepresented in clinical trials (Singh et al., 2017), therefore an immense lack of knowledge on treatment-toxicities and side effects in this population exists. Treatment needs to be adapted to older patients frailty-level, which can be conducted applying a time- and resource consuming Comprehensive Geriatric Assessment (Le Saux et al., 2019). Still, there is no consensus on which domains to include and how to measure them (Hamaker, Jonker, et al., 2012). A geriatric screening can alleviate burden of conducting a whole CGA. Several screening instruments exists, yet there is inconsistent data (Kotzerke et al., 2019; Mohile et al., 2018; Soubeyran et al., 2014) which tool yields the best predictive performance. Our project aimed to compare three of the available screening tools (VES-13, G8, POT/CARG). Being far from having a perfect predictive performance, the POT/CARG occurs to be the screening instrument with a high sensitivity and sufficient negative predictive value. Furthermore, our research supports the increasing evidence that ultra-short-screeners such as ECOG state or age bear only insufficient predictive performance.:1. Introduction 1.1 What are Patient-reported outcomes (PROs)? 1.2 Assessment of PROs 1.2.1 Feasible in clinical routine, improving relevant outcomes 1.2.2 Improving diagnostic accuracy 1.2.3 Supporting drug development 1.2.4 Evolving measurement techniques and standardization 1.3 PRO-based feedback interventions 1.4 PRO-based geriatric screening 1.5 Research needs 1.5.1 Identifying a suitable geriatric screener 1.5.2 Limited PRO-data on Soft-Tissue Sarcoma (STS) patients 1.5.3 Feasibility-research in routine care 1.6 study aims 2. Methods 2.1 Design and Sample of Publication A 2.2 Design and Sample of Publication B 2.3 Design and Sample of Publication C 2.4 Instruments 2.5 Non-PRO-Outcomes 2.5.1 Predictive performance 2.5.2 Survival analysis 2.5.3 Feasibility analysis 2.6 Statistical Analysis 2.6.1 Sample Size Estimation 2.6.2 Non-participation and drop-out analysis 2.6.3 Regression Analyses 2.6.4 Statistical software 2.6.5 Statistical analysis plans 3. Outline of Publications Publication A Publication B Publication C 4. Discussion 4.1 Main findings, integration in existing research and research implications 4.1.1 Geriatric screening tools 4.1.2 PROs in soft tissue sarcoma (STS) 4.1.3 Implementation of PROs into routine care 4.2 Strengths and Limitations 4.2.1 Strengths 4.2.2 Limitations 5. Conclusions 6. Summary 7. References 8. Appendix 8.1 Darstellung des eigenen Beitrags 8.1.1 Darstellung des eigenen Beitrags zur Publikation A 8.1.2 Darstellung des eigenen Beitrags zur Publikation B 8.1.3 Darstellung des eigenen Beitrags zur Publikation C 8.2 Erklärung über die eigenständige Abfassung der Arbeit 8.3 Curriculum Vitae 8.4 Publikationsverzeichnis 8.5 Danksagung

Buildings which address space through all the senses, rather than being dominated by ocular centric considerations solely, have become the minority within the discipline of Architecture. This can create an imbalance, perceivable as feelings of estrangement and detachment for the inhabitant. Estrangement is particularly evident within health care architecture, which owes much of its current form to ideas developed during Modernism. In response to this imbalance, Architecture from the past may have lessons which can be applied. This thesis investigates the potential of applying spatial techniques and approaches learned from the 16th century Japanese tea-house. A health care building which benefits from the same kind of reflective and contemplative spaces inherent in the tea-house includes counseling facilities, and therefore an outpatient cancer care center was chosen to apply these lessons. Among the techniques researched and applied, the use of a sequential vision of spatial experience, which reveals the building in stages and facilitates spaces for pause and reflection, was particularly powerful. The result is a building with spaces that take on an almost sacred tone, where one can be at peace with the realities of their current situation, and begin thinking about the path forward. / Master of Architecture