Improving Cancer Treatment Communication between Secondary and Primary Care: A New Format for Written Communication.

In decision making for cancer treatment, information is crucial for patients and health care professionals. Although conversations about treatment decisions take place in hospitals, many patients also appreciate the insights of their general practitioner (GP). GPs indicated that, in order to have meaningful conversations about treatment decisions with their patients, they need additional information about treatment options and considerations, such as expected benefits and side effects. In this practice innovation, we developed and implemented a new written communication format from medical specialists to GPs, aimed at providing accurate treatment information to facilitate GPs in supporting patients with cancer in decision-making. The new format added 3 specific headings to standard letters in the electronic patient files (EPFs): (1) treatment options, (2) treatment considerations, and (3) treatment intent. This innovation was implemented in a large university hospital in the Netherlands between 2020 and 2021. We performed a process evaluation of the implementation using the RE-AIM model, based on assessment of written communication obtained from patients' EPFs, and telephonic interviews with specialists and GPs. In the Netherlands, all inhabitants are registered with a GP, who acts as a gatekeeper to specialist care, and has a comprehensive overview of a patient's history, based on digital communication with hospitals after referral for specialist care. EPFs are used to generate digital letters to communicate between medical specialists in a hospital and GPs outside the hospital. Incorporating new headings in the communication format in the EPF successfully encouraged medical specialists to share such information when used appropriately. Treatment options, considerations, and treatment intent were stated more often in the new format compared with the old format. GPs appreciated the new format, highlighting the value of including treatment considerations, which enhanced their comprehension of the medical specialist's thought processes. Recognition of the problem and motivation for improvement facilitated the implementation. Specialists stated the format to be time-efficient compared with the old format; however, technical improvements could make it easier to use. Automaticity to use of the old format, inadequate information, and technical issues were a barrier for implementation. In summary, a straightforward innovation can improve communication between medical specialists and GPs and promote the role of the GPs in decision making for cancer treatment.

Managing menopause after cancer.

Globally, 9 million women are diagnosed with cancer each year. Breast cancer is the most commonly diagnosed cancer worldwide, followed by colorectal cancer in high-income countries and cervical cancer in low-income countries. Survival from cancer is improving and more women are experiencing long-term effects of cancer treatment, such as premature ovarian insufficiency or early menopause. Managing menopausal symptoms after cancer can be challenging, and more severe than at natural menopause. Menopausal symptoms can extend beyond hot flushes and night sweats (vasomotor symptoms). Treatment-induced symptoms might include sexual dysfunction and impairment of sleep, mood, and quality of life. In the long term, premature ovarian insufficiency might increase the risk of chronic conditions such as osteoporosis and cardiovascular disease. Diagnosing menopause after cancer can be challenging as menopausal symptoms can overlap with other common symptoms in patients with cancer, such as fatigue and sexual dysfunction. Menopausal hormone therapy is an effective treatment for vasomotor symptoms and seems to be safe for many patients with cancer. When hormone therapy is contraindicated or avoided, emerging evidence supports the efficacy of non-pharmacological and non-hormonal treatments, although most evidence is based on women older than 50 years with breast cancer. Vaginal oestrogen seems safe for most patients with genitourinary symptoms, but there are few non-hormonal options. Many patients have inadequate centralised care for managing menopausal symptoms after cancer treatment, and more information is needed about cost-effective and patient-focused models of care for this growing population.

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 < .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 < .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.

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

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.

Improving Care for Patients Living with Prolonged Incurable Cancer.

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.

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.

GP involvement after a cancer diagnosis; patients' call to improve decision support.

BACKGROUND: Shared decision making (SDM) is considered important to realise personalised cancer care. Increased GP involvement after a diagnosis is advocated to improve SDM. AIM: To explore whether patients with cancer are in need of GP involvement in cancer care in general and in SDM, and whether GP involvement occurs. DESIGN & SETTING: An online national survey was distributed by the Dutch Federation of Cancer Patient Organisations (NFK) in May 2019. METHOD: The survey was sent to (former) patients with cancer. Topics included GP involvement in cancer care in general and in SDM. Descriptive statistics and quotes were used. RESULTS: Among 4763 (former) patients with cancer, 59% (n = 2804) expressed a need for GP involvement in cancer care. Of these patients, 79% (n = 2193) experienced GP involvement. Regarding GP involvement in SDM, 82% of patients (n = 3724) expressed that the GP should 'listen to patients' worries and considerations', 69% (n = 3130) to 'check patients' understanding of information', 66% (n = 3006) to 'discuss patients' priorities in life and the consequences of treatment options for these priorities', and 67% (n = 3045) to 'create awareness of the patient's role in the decision making'. This happened in 47%, 17%, 15% and 10% of these patients, respectively. CONCLUSION: The majority of (former) patients with cancer expressed a need for active GP involvement in cancer care. GP support in the fundamental SDM steps is presently insufficient. Therefore, GPs should be made aware of these needs and enabled to support their patients with cancer in SDM.

Prioritisation of treatment goals among older patients with non-curable cancer: the OPTion randomised controlled trial in Dutch primary care.

BACKGROUND: Older patients with cancer often find it difficult to take part in shared decision making. AIM: To assess the utility of the Outcome Prioritisation Tool (OPT), designed to aid discussion with a patient in regards to their treatment goals, to empower patients with cancer through structured conversations about generic treatment goals with GPs. DESIGN AND SETTING: A randomised controlled trial of 114 Dutch participants recruited between November 2015 and January 2019, aged ≥60 years with non-curable cancer who had to make a treatment decision with an oncologist. The intervention group used the OPT while the control group received care as usual. METHOD: The primary outcome was patient empowerment using the score on the decision self-efficacy (DSE) scale. Secondary outcomes were symptoms measures of fatigue, anxiety, and depression. The experiences of participants were also explored. RESULTS: No effect was found on patient empowerment between the OPT group (n = 48; DSE 86.8; standard deviation [SD] = 18.2) and the control group (n = 58; DSE 84.2; SD = 17.6; P = 0.47). In the OPT group, although statistically non-significant, fewer patients had low empowerment (18.8%, n = 9 versus 24.1%, n = 14; P = 0.50), but they did have statistically significant lower mean anxiety scores (6.0, SD = 4.6 versus 7.6, SD = 4.4; P<0.05) and less mild fatigue (58.8%, n = 30 versus 77.2%, n = 44; P = 0.05). Overall, 44.8% (n = 13) of patients indicated that the OPT-facilitated conversation helped them make a treatment decision, and 31.1% (n = 14) of the GPs reported that they gained new insights from the conversation. CONCLUSION: An OPT-facilitated conversation about generic treatment goals between patients and their GPs is associated with less anxiety and fatigue, but did not show statistically significant improvements in patient empowerment. Adding the OPT to routine care might ensure more patient-tailored care.

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.

Using the Outcome Prioritization Tool (OPT) to assess the preferences of older patients in clinical decision-making: A review.

Shared decision making can guide patients facing difficult treatment decisions, with a trade-off between risks and benefits, taking patient goals and preferences into account. The Outcome Prioritization Tool (OPT) was developed to facilitate the discussion of goals and preferences with older patients in an encompassing, non-disease-specific way. The OPT is used in both primary and secondary healthcare for several treatment decisions, but data regarding the tool are limited. A concise review yielded two developmental articles, four articles describing three studies using the OPT, and one study protocol. All studies were performed among older patients. In those studies, the majority of patients ranked maintaining independence as most important. The tool has been shown to be feasible for both patients and healthcare providers.

[Correspondence between primary and secondary healthcare providers about patients with cancer; how can it be improved?] / Correspondentie tussen eerste en tweede lijn over patiënten met kanker.

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.

A systematic review on the prevalence of symptoms of depression, anxiety and distress in long-term cancer survivors: Implications for primary care.

INTRODUCTION: Symptoms of depression, anxiety and distress are common in the first years after a cancer diagnosis, but little is known about the prevalence of these symptoms at the long term. The aim of this review was to describe the prevalence of symptoms of depression, anxiety and distress in long-term cancer survivors, five or more years after diagnosis, and to provide implications for primary care. METHODS: We performed a systematic literature search in the PubMed, PsycINFO and CINAHL databases. Studies were eligible when reporting on the prevalence of symptoms of depression, anxiety and/or distress in long-term cancer survivors (≥5 years after diagnosis), treated with curative intent. RESULTS: A total of 20 studies were included. The reported prevalence of depressive symptoms (N = 18) varied from 5.4% to 49.0% (pooled prevalence: 21.0%). For anxiety (N = 7), the prevalence ranged from 3.4% to 43.0% (pooled prevalence: 21.0%). For distress (N = 4), the prevalence ranged from 4.3% to 11.6% (pooled prevalence: 7.0%). CONCLUSION: Prevalences of symptoms of depression, anxiety and distress among long-term survivors of cancer do not fundamentally differ from the general population. This is reassuring for primary care physicians, as they frequently act as the primary physician for long-term survivors whose follow-up schedules in the hospital have been completed.

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.

Effects of Shared Decision Making on Distress and Health Care Utilization Among Patients With Lung Cancer: A Systematic Review.

CONTEXT: Lung cancer is associated with significant distress, poor quality of life, and a median prognosis of less than one year. Benefits of shared decision making (SDM) have been described for multiple diseases, either by the use of decisions aids or as part of supportive care interventions. OBJECTIVES: The objective of this study was to summarize the effects of interventions facilitating SDM on distress and health care utilization among patients with lung cancer. METHODS: We performed a systematic literature search in the CINAHL, Cochrane, EMBASE, MEDLINE, and PsychINFO databases. Studies were eligible when conducted in a population of patients with lung cancer, evaluated the effects of an intervention that facilitated SDM, and measured distress and/or health care utilization as outcomes. RESULTS: A total of 12 studies, detailed in 13 publications, were included: nine randomized trials and three retrospective cohort studies. All studies reported on a supportive care intervention facilitating SDM as part of their intervention. Eight studies described effects on distress, and eight studies measured effects on health care utilization. No effect was found in studies measuring generic distress. Positive effects, in favor of the intervention groups, were observed in studies using anxiety-specific measures (n = 1) or depression-specific measures (n = 3). Evidence for reductions in health care utilization was found in five studies. CONCLUSION: Although not supported by all studies, our findings suggest that facilitating SDM in the context of lung cancer may lead to improved emotional outcomes and less aggressive therapies. Future studies, explicitly studying the effects of SDM by using decision aids, are needed to better elucidate potential benefits.

Weak self-directed learning skills hamper performance in cumulative assessment.

BACKGROUND: Self-regulated learning is an important determinant of academic performance. Previous research has shown that cumulative assessment encourages students to work harder and improve their results. However, not all students seem to respond as intended. We investigated the influence of students' behavioral traits on their responsiveness to a cumulative assessment strategy. METHOD: The cumulative test results of a third-year integrated ten-week course unit were analyzed. The test was divided into three parts delivered at 4, 8 and 10 weeks. Low starters (below median) with low or high improvement (below or above the median) were identified and compared regarding their behavioral traits (assessed with the Temperament and Character Inventory questionnaire). RESULTS: A total of 295 students filled out the questionnaire. A percentage of 70% of the students below the median on the first two test parts improved during the final part. Students who were less responsive to improve their test results, scored low only on the TCI scale "self directedness" (t = 2.49; p = 0.011). CONCLUSION: Behavioral traits appear to influence student reactions to feedback on test results, with students with low self-directedness scores being particularly at risk. They can thus be identified and should receive special attention from student counselors.

Functional disability as an explanation of the associations between chronic physical conditions and 12-month major depressive episode.

BACKGROUND: The link between physical conditions and mental health is poorly understood. Functional disability could explain the association of physical conditions with major depressive episode (MDE) as an intermediary factor. METHODS: Data was analyzed from a subsample (N=8796) of the European Study of the Epidemiology of Mental Disorders (ESEMeD), a cross-sectional general population survey. MDE during the last 12 months was assessed using a revision of the Composite International Diagnostic Interview (CIDI 3.0). Lifetime chronic physical conditions were assessed by self-report. Functional disability was measured using a version of the World Health Organization Disability Assessment Schedule (WHODAS). The associations of physical conditions with MDE and explanation by functional disability were quantified using logistic regression. RESULTS: All physical conditions were significantly associated with MDE. The increases in risk of MDE ranged from 30% for allergy to amply 100% for arthritis and heart disease. When adjusted for physical comorbidity, associations decreased and were no longer statistically significant for allergy and diabetes. Functional disability explained between 17 and 64% of these associations, most substantially for stomach or duodenum ulcer, arthritis and heart disease. LIMITATIONS: Due to the cross-sectional nature of the study the temporal relationship of the variables could not be assessed and the amount of explanation cannot simply be interpreted as the amount of mediation. CONCLUSIONS: Our findings suggest that the association of chronic physical conditions with MDE is partly explained by functional disability. Such explanation is more pronounced for pain causing conditions and heart disease. Health professionals should be particularly aware of the increased risk of depressive disorder when patients experience disability from these conditions.