Improving Care for Patients Living with Prolonged Incurable Cancer

SIMPLE SUMMARY: Not all patient with cancer can be cured. However, some patients with incurable cancer may expect to live for a substantial period of time. The number of patients in this group is increasing. These patients with ‘prolonged incurable cancer’ are often overlooked in research and clinical practice. They may have questions related to palliative care (e.g., about the end of life) and related to survivorship care (e.g., about late treatment effects). By itself, a palliative or survivorship perspective may therefore be insufficient to cover the wide range of physical and psychosocial problems that patients with prolonged incurable cancer encounter. Elements from both fields should therefore be delivered concordantly. This proposed new care model can further optimize care pathways for these patients. Furthermore, enhanced clinical awareness for this patient population as well as further research are urgently needed. ABSTRACT: The number of patients that can no longer be cured but may expect to live with their cancer diagnosis for a substantial period is increasing. These patients with ‘prolonged incurable cancer’ are often overlooked in research and clinical practice. Patients encounter problems that are traditionally seen from a palliative or survivorship perspective but this may be insufficient to cover the wide range of physical and psychosocial problems that patients with prolonged incurable cancer may encounter. Elements from both fields should, therefore, be delivered concordantly to further optimize care pathways for these patients. Furthermore, to ensure future high-quality care for this important patient population, enhanced clinical awareness, as well as further research, are urgently needed

Experiences and needs of patients with incurable cancer regarding advance care planning:results from a national cross-sectional survey

Introduction: Patients faced with incurable cancer may experience a lack of support from their physician throughout and after treatment. Studies on the needs and experiences of these patients are scarce. In this study, we explored the needs and experiences of patients diagnosed with incurable cancer regarding the conversation, in which they were told that their cancer was incurable, the care received after this conversation, and their preferences regarding end-of-life conversations. Methods: Data were cross-sectionally collected through a national online survey in the Netherlands (September 2018). Descriptive statistics and correlation coefficients were reported and subgroups were compared. Results: Six hundred fifty-four patients (mean age 60 years; 58% women) completed the survey. Patients were primarily diagnosed with breast cancer (22%) or a hematological malignancy (21%). Patients reported a strong need for emotional support during the conversation, in which they were told their cancer was incurable (mean score 8.3; scale 1–10). Their experienced satisfaction with received emotional support was mediocre (mean score 6.4; scale 1–10). Of those patients who felt like they did not receive any additional care (37%) after the diagnosis, the majority expressed a clear need for this kind of care (59%). Mostly, support pertained to psychosocial issues. Regarding conversations about the end of life, most patients (62%) expressed a need to discuss this topic, and preferred their healthcare provider to initiate this conversation. Conclusion: Care for patients with incurable cancer can be further improved by tailoring conversations to specific needs and timely providing appropriate supportive care services

Patient Preferences for Treatment Outcomes in Oncology with a Focus on the Older Patient:A Systematic Review

SIMPLE SUMMARY: In oncology, treatment outcomes can be competing, which means that one treatment could benefit one outcome, like survival, and negatively influence another, like independence. The choice of treatment therefore depends on the patient’s preference for outcomes, which needs to be assessed explicitly. Especially in older patients, patient preferences are important. Our systematic review summarizes all studies that assessed patient preferences for various treatment outcome categories. A total of 28 studies with 4374 patients were included, of which only six studies included mostly older patients. Although quality of life was only included in half of the studies, overall quality of life (79%) was most frequently prioritized as highest or second highest, followed by overall survival (67%), progression- and disease-free survival (56%), absence of severe or persistent treatment side effects (54%), treatment response (50%), and absence of transient short-term side effects (16%). In shared decision-making, these results can be used by healthcare professionals to better tailor the information provision and treatment recommendations to the individual patient. ABSTRACT: For physicians, it is important to know which treatment outcomes are prioritized overall by older patients with cancer, since this will help them to tailor the amount of information and treatment recommendations. Older patients might prioritize other outcomes than younger patients. Our objective is to summarize which outcomes matter most to older patients with cancer. A systematic review was conducted, in which we searched Embase and Medline on 22 December 2020. Studies were eligible if they reported some form of prioritization of outcome categories relative to each other in patients with all types of cancer and if they included at least three outcome categories. Subsequently, for each study, the highest or second-highest outcome category was identified and presented in relation to the number of studies that included that outcome category. An adapted Newcastle–Ottawa Scale was used to assess the risk of bias. In total, 4374 patients were asked for their priorities in 28 studies that were included. Only six of these studies had a population with a median age above 70. Of all the studies, 79% identified quality of life as the highest or second-highest priority, followed by overall survival (67%), progression- and disease-free survival (56%), absence of severe or persistent treatment side effects (54%), and treatment response (50%). Absence of transient short-term side effects was prioritized in 16%. The studies were heterogeneous considering age, cancer type, and treatment settings. Overall, quality of life, overall survival, progression- and disease-free survival, and severe and persistent side effects of treatment are the outcomes that receive the highest priority on a group level when patients with cancer need to make trade-offs in oncologic treatment decisions

How well do healthcare professionals know of the priorities of their older patients regarding treatment outcomes?

OBJECTIVES: For shared decision making, it is crucial to identify patients' priorities regarding health outcomes. Our aim was to study whether healthcare professionals know these priorities. METHODS: In this cross-sectional study we included older patients who had to make a treatment decision, their general practitioners (GPs) and their medical specialists. Agreement between the patients' main health outcome as prioritised by using the Outcome Prioritization Tool (OPT) and the perception of the same outcome by their healthcare professionals. RESULTS: Eighty-seven patients were included. Median age was 76 years, 87.4% of patients presented with malignant disease. The majority prioritised maintaining independence (51.7%), followed by extending life (27.6%). The agreement between patients and healthcare professionals was low (GPs 41.7%, kappa 0.067, p = 0.39), medical specialists 40.3%, kappa 0.074, p = 0.33). Positively related to agreement was patient's age > 75, and a longer relation with their patients (for GPs), and the patient having no partner (for medical specialist). Having a malignant disease, dependent living and functional deficits were negatively related to agreement. CONCLUSIONS: Healthcare professionals have poor perceptions of their patients' priorities. PRACTICE IMPLICATIONS: To realise patient-centered care, it is crucial to discuss priorities explicitly with all patients

Correspondence between primary and secondary healthcare providers about patients with cancer; how can it be improved?

OBJECTIVE: To explore the correspondence between primary and secondary healthcare providers about patients with lung, breast or colorectal cancer.DESIGN: Qualitative research.METHOD: We collected the medical files of 50 patients with lung, breast or colorectal cancer by purposive sampling and selected the correspondence-related items from them. These concerned referral letters from primary to secondary caregivers and letters from specialists. A qualitative content analysis of these documents was performed. In addition, 4 general practitioners, 4 oncologists and 1 nurse specialist were interviewed.RESULTS: We analysed 50 referral letters and 369 letters from specialists. Content could be divided into 6 main themes in the referral letters, and it was noticeable that highly relevant information regarding the past medical history was often mixed with less relevant information. The same was true for the medication list and case history to a certain extent. We could distinguish 9 themes in the letters from specialists. All the letters from specialists did include information about the current treatment, but information about treatment intent (curative or palliative) or alternative treatment options was rarely available. Interviews with the healthcare providers confirmed these findings.CONCLUSION: The study findings indicate that referral letters and specialist correspondence are not sufficiently tailored to the needs of the recipient.</p

Correspondence between primary and secondary care about patients with cancer:A qualitative mixed-methods analysis

Cancer care is complex and involves many different healthcare providers, especially during diagnosis and initial treatment, and it has been reported that both general practitioners and oncology specialists experience difficulties with interdisciplinary communication. The aim of this qualitative study was to explore information sharing between primary and secondary care for patients with lung, breast or colorectal cancer. A qualitative content analysis of 50 medical files (419 documents) was performed, which identified 70 correspondence-related items. Six main topics were identified in most referral letters from primary to secondary care, but it was particularly notable that highly relevant information regarding the past medical history was often mixed with less relevant information. To lesser extents, the same held true for the medication list and presenting history. In the letters from specialists, nine topics were identified in most letters. Although information about actual treatment was always present, only limited detail, if any, was given about the intent of the treatment (curative or palliative) or the treatment alternatives. Interviews with nine healthcare providers confirmed these issues. These findings indicate that neither the initial referral nor the specialist correspondence is tailored to the needs of the recipient

Survival After Wait-and-See Approach in Older Patients With Unexplained Iron Deficiency Anemia in Primary Care:A Practice Evaluation

Objectives: Guidelines recommend upper and lower gastrointestinal endoscopic evaluation for patients without a clear physiological explanation for iron deficiency anemia (IDA). However, the consequences of watchful waiting in older patients with unexplained IDA in general practice are unknown. The aim of this study was to investigate characteristics and survival of patients with an unexplained IDA in general practice who refrain from medical specialist evaluation.Design: Historical prospective study. Setting and Participants: Patients aged ≥70 years with IDA coded in their medical records were selected from the Dutch Academic General Practitioner Development Network (AHON) database.Methods: Based on their medical records, patients with an unexplained IDA were classified as (1) referred for medical specialist evaluation, or (2) no or noninvasive evaluation in general practice.Results: Compared to patients who were referred for medical specialist evaluation (n = 235, 47.8%), patients who had no or noninvasive evaluation (n = 257; 52.5%) were older (median respectively 79 vs 82 years old, P &lt; .01) and more likely to have congestive heart failure (respectively 17.4% and 26.1%, P = .02) and dementia (respectively 2.6% and 8.9%, P &lt; .01). Two-year survival was significantly higher in patients who were referred for medical specialist evaluation compared to patients who had no or noninvasive evaluation (respectively, 83.9% and 75.5%, P = .02).Conclusions and Implications: Although mortality was significantly higher in the older and more comorbid patients who had no or noninvasive evaluation in general practice, survival was still high in this patient group. Therefore, non–guideline adherence and a wait-and-see approach could be discussed in a shared–decision-making consultation.</p