Living in the twilight zone: a qualitative study on the experiences of patients with advanced cancer obtaining long-term response to immunotherapy or targeted therapy.

PURPOSE: The introduction of immunotherapy and targeted therapy has drastically improved the life expectancy of patients with advanced cancer. Despite improved survival, obtaining long-term response can be highly distressing and comes with uncertainties that affect several life domains. The aim of this study is to gain a deeper understanding of long-term responders' lived experiences with obtaining long-term response to immunotherapy or targeted therapy. METHODS: We conducted an exploratory qualitative study using thematic data analysis. Semi-structured in-depth interviews were conducted with 17 patients with advanced melanoma or lung cancer who had a confirmed response to or long-term stable disease while on immunotherapy or targeted therapy. RESULTS: Long-term responders are living in a twilight zone, where they neither feel like a patient, nor feel healthy. This impacts their self-image, interactions with their social environment, and feelings of uncertainty. Due to their uncertain life perspective, long-term responders are going back and forth between hope and despair, while they are longing for their 'old' life, several barriers, such as protective behavior of the social environment, force them to adjust to a life with cancer. CONCLUSION: Long-term responders are facing many challenges, such as searching for a renewed identity, dealing with ongoing uncertainty, and having to adapt to a new normal. This emphasizes the importance of providing this new patient group with tailored information and support. IMPLICATIONS FOR CANCER SURVIVORS: Healthcare professionals can support patients by normalizing their feelings and providing space for varying emotions. Using patient-tailored scan frequencies could help temper fear of progression.

Nurse Practitioners' Self-Efficacy and Behavior in Supporting Self-Management of Patients With a Progressive, Life-Threatening Illness and Their Relatives: A Nationwide, Cross-Sectional Online Survey.

This study aimed at investigating nurse practitioners' self-efficacy and behavior in supporting self-management of patients with a progressive, life-threatening illness and their relatives. We adapted an existing validated instrument for this purpose, amongst other things by adding a seventh subscale "attention for relatives," and administered it in a nationwide, cross-sectional online survey among Dutch nurse practitioners. We analyzed associations between self-reported self-efficacy and behavior using Pearson correlations and paired sample t tests. Associations between self-efficacy and behavior with nurse practitioners' characteristics were examined using linear regression models. Most nurse practitioners (n = 327; 26% complete responses) were women (93%). Subscale and total scores for nurse practitioners' self-efficacy were moderately positively correlated with those for their behavior in self-management support. Subscale and total scores were statistically significantly higher for their self-efficacy than for their behavior. Increased work experience with patients with a progressive, life-threatening illness was associated with higher scores on self-efficacy and behavior in self-management support. We conclude that nurse practitioners are confident in their ability to support self-management; yet, they do not always use these competencies in practice.

End-of-life care for homeless people in shelter-based nursing care settings: A retrospective record study.

BACKGROUND: Homeless people experience multiple health problems and early mortality. In the Netherlands, they can get shelter-based end-of-life care, but shelters are predominantly focused on temporary accommodation and recovery. AIM: To examine the characteristics of homeless people who reside at the end-of-life in shelter-based nursing care settings and the challenges in the end-of-life care provided to them. DESIGN: A retrospective record study using both quantitative and qualitative analysis methods. SETTING/PARTICIPANTS: Two Dutch shelter-based nursing care settings. We included 61 homeless patients who died between 2009 and 2016. RESULTS: Most patients had somatic (98%), psychiatric (84%) and addiction problems (90%). For 75% of the patients, the end of life was recognised and documented; this occurred 0-1253 days before death. For 26%, a palliative care team was consulted in the year before death. In the three months before death, 45% had at least three transitions, mainly to hospitals. Sixty-five percent of the patients died in the shelter, 27% in a hospital and 3% in a hospice. A quarter of all patients were known to have died alone. Documented care difficulties concerned continuity of care, social and environmental safety, patient-professional communication and medical-pharmacological alleviation of suffering. CONCLUSIONS: End-of-life care for homeless persons residing in shelter-based nursing care settings is characterised and challenged by comorbidities, uncertain prognoses, complicated social circumstances and many transitions to other settings. Multilevel end-of-life care improvements, including increased interdisciplinary collaboration, are needed to reduce transitions and suffering of this vulnerable population at the end of life.

Self-management of patients with advanced cancer: A systematic review of experiences and attitudes.

BACKGROUND: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention. AIM: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management. DESIGN: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting. DATA SOURCES: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019). RESULTS: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient-professional partnerships (three articles). CONCLUSION: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals.

Self-reported health, healthcare service use and health-related needs: A comparison of older and younger homeless people.

The number of older homeless people with a limited life expectancy is increasing. European studies on their health-related characteristics are lacking. This study compared self-reported health, healthcare service use and health-related needs of older and younger homeless people in the Netherlands. It is part of a cohort study that followed 513 homeless people in the four major Dutch cities for a period of 2.5 years, starting from the moment they registered at the social relief system in 2011. Using cross-sectional data from 378 participants who completed 2.5-year follow-up, we analysed differences in self-reported health, healthcare service use, and health-related needs between homeless adults aged ≥50 years (N = 97) and <50 years (N = 281) by means of logistic regression. Results show that statistically significantly more older than younger homeless people reported cardiovascular diseases (23.7% versus 10.3%), visual problems (26.8% versus 14.6%), limited social support from family (33.0% versus 19.6%) and friends or acquaintances (27.8% versus 14.6%), and medical hospital care use in the past year (50.5% versus 34.5%). Older homeless people statistically significantly less often reported cannabis (12.4% versus 45.2%) and excessive alcohol (16.5% versus 27.0%) use in the past month and dental (20.6% versus 46.6%) and mental (16.5% versus 25.6%) healthcare use in the past year. In both age groups, few people reported unmet health-related needs. In conclusion, compared to younger homeless adults, older homeless adults report fewer substance use problems, but a similar number of dental and mental problems, and more physical and social problems. The multiple health problems experienced by both age groups are not always expressed as needs or addressed by healthcare services. Older homeless people seem to use more medical hospital care and less non-acute, preventive healthcare than younger homeless people. This vulnerable group might benefit from shelter-based or community outreach programmes that proactively provide multidisciplinary healthcare services.

The Views of Homeless People and Health Care Professionals on Palliative Care and the Desirability of Setting Up a Consultation Service: A Focus Group Study.

CONTEXT: Palliative care for homeless people is often given late, if at all. Professionals in both palliative care and shelter care are often insufficiently equipped to provide this complex care. OBJECTIVES: To provide insights into the palliative care experiences of professionals and homeless people, including barriers and facilitators to care, and to investigate whether a consultative function can help improve palliative care for homeless people. METHODS: Six focus groups were included; four with professionals (n = 19) and two with severely ill homeless people (n = 15). Professionals were sampled purposively in organizations providing (palliative) care to the homeless. Homeless people were recruited by opportunity sampling. RESULTS: Palliative care for homeless people is especially complex and differs substantially from regular palliative care. It differs greatly among professionals, institutions, and cities. Homeless people get less autonomy than they would like. Homeless people and professionals have different perceptions of the care provided. Trusting relationships between professionals and homeless people is essential and easily accessible, and flexible care is needed. Consultation, in particular involving exchange of expertise between professionals, can provide added value to professionals. Homeless people consider consultation primarily as an opportunity to train professionals to show more understanding, provide tailored palliative care, and enhance professional collaboration. The local situation, characteristics of a consultant, and role of a consultant in providing information and education must be considered when developing the consultation process. CONCLUSION: Consultation can play an important role in improving palliative care by linking disciplines, providing support to professionals and appropriate palliative care to homeless people.

Palliative care for homeless people: a systematic review of the concerns, care needs and preferences, and the barriers and facilitators for providing palliative care.

BACKGROUND: Homeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both the homeless and healthcare providers experience a lot of barriers. Therefore, providing palliative care that fits the needs and concerns of the homeless is a challenge to healthcare providers. This systematic review aims to summarize evidence about the concerns, palliative care needs and preferences of homeless people, as well as barriers and facilitators for delivering high quality palliative care. METHODS: PubMed, Embase, PsycINFO, CINAHL and Web of Science were searched up to 10 May 2016. Included were studies about homeless people with a short life expectancy, their palliative care needs and the palliative care provided, that were conducted in Western countries. Data were independently extracted by two researchers using a predefined extraction form. Quality was assessed using a Critical Appraisal instrument. The systematic literature review was based on the PRISMA statement. RESULTS: Twenty-seven publications from 23 different studies met the inclusion criteria; 15 studies were qualitative and eight were quantitative. Concerns of the homeless often related to end-of-life care not being a priority, drug dependence hindering adequate care, limited insight into their condition and little support from family and relatives. Barriers and facilitators often concerned the attitude of healthcare professionals towards homeless people. A respectful approach and respect for dignity proved to be important in good quality palliative care. CONCLUSIONS: A patient-centred, flexible and low-threshold approach embodying awareness of the concerns of homeless people is needed so that appropriate palliative care can be provided timely. Training, education and experience of professionals can help to accomplish this.