'When I can ride my bike, I think, am I at all as sick as they say?' An exploration of how men with advanced lung cancer form illness perceptions in everyday life.

OBJECTIVE: The purpose of this study was to explore how men with advanced lung cancer form perceptions of their illness in everyday life and how this influences perceptions about rehabilitation. METHODS: Constructivist grounded theory principles guided the collection and analysis of data from in-depth interviews with 10 men with advanced lung cancer. RESULTS: The findings show that the men's illness perception was fluid, contextual and formed by interrelated factors. Engaging in daily activities and maintaining everyday life was a strong influence on their illness perception. CONCLUSION: In order to make rehabilitation relevant to men with lung cancer, consideration should be given to how the men's everyday lives may be incorporated into the service provision.

Prognostic Understanding at Diagnosis and Associated Factors in Patients with Advanced Lung Cancer and Their Caregivers.

BACKGROUND: Prognostic understanding in advanced cancer patients and their caregivers may have an impact on the delivery of effective care. The aims of this study were to explore prognostic understanding at diagnosis in both patients with advanced lung cancer and their caregivers and to investigate correlates of their understanding. SUBJECTS, MATERIALS, AND METHODS: A total of 193 patients with newly diagnosed advanced lung cancer and their 167 caregivers were enrolled at 16 hospitals in Japan. We assessed their perceptions of prognosis and goals of therapy and examined their associations with their sociodemographic characteristics, clinical status, quality of life, mood symptoms, and the status of disclosure of information by their treating physicians. RESULTS: One fifth of patients and caregivers (21.7% and 17.6%, respectively) mistakenly believed that the patients' cancer was "completely curable." Substantial proportions of them (16.9% and 10.3%, respectively) mistakenly believed that the primary goal of therapy was to remove all the cancer. Levels of anxiety and depression in both patients and caregivers were significantly higher among those who had accurate understanding of prognosis. In multivariate analyses, inaccurate perceptions of prognosis in patients were associated with sex, better emotional well-being, and lower lung cancer-specific symptom burden. Caregivers' inaccurate perceptions of patients' prognoses were associated with better performance status and better emotional well-being of patients. CONCLUSION: Substantial proportions of advanced lung cancer patients and their caregivers misunderstood their prognosis. Interventions to improve their accurate prognostic understanding should be developed with careful attention paid to its associated factors. IMPLICATIONS FOR PRACTICE: This study demonstrated that substantial proportions of patients with newly diagnosed advanced lung cancer and their caregivers had misunderstandings about their prognosis. Accurate perceptions of prognosis, which are indispensable in the delivery of effective care, were associated with elevated levels of anxiety and depression in both patients and caregivers, warranting psychosocial care and support for them immediately after diagnosis. Inaccurate perceptions of prognosis in patients were associated with better emotional well-being and lower lung cancer-specific symptom burden. Illness understanding in caregivers was associated with patients' physical and mental status. Those findings provide insight into how they obtain accurate illness understanding.

Strategies for healthcare professionals to facilitate patient illness understanding.

AIMS AND OBJECTIVES: To describe how healthcare professionals facilitate patient illness understanding. BACKGROUND: Healthcare professionals and patients differ in their illness understanding. If the information provided by healthcare professionals is not adapted to the patient's daily life, it may be unusable for the patient. Previous research has found that healthcare professionals should individualise the information to enable the patient to apply the knowledge to the personal situation and to develop illness understanding. However, little is known of how healthcare professionals can facilitate patient illness understanding. METHOD: A qualitative descriptive study based on individual, semi-structured, open-ended and face-to-face interviews was conducted with healthcare professionals (n = 11) concerning how they facilitate patients illness understanding. Three health centres were involved during the period of March to November 2014. The interviews were analysed with qualitative content analysis. RESULTS: The result identified a continuous and collaborative process with three strategies used by healthcare professionals to facilitate the patient's illness understanding: (i) assess the patient's illness understanding, (ii) interact with the patient to develop illness understanding and (iii) support the patient's personal development for illness understanding. The steps in the process depend on each other. CONCLUSIONS: The results of our analysis indicate that healthcare professionals can use the continuous and collaborative process to enhance the patient's self-care ability and turn his or her knowledge into action for improving illness understanding. RELEVANCE TO CLINICAL PRACTICE: The three continuous and collaborative process strategies involving pedagogical approaches can create conditions for healthcare professionals to obtain a holistic view of the patient's life and to be a key resource for person-centred care.

Accuracy of advanced cancer patients' life expectancy estimates: The role of race and source of life expectancy information.

BACKGROUND: The objective of this study was to examine the source of advanced cancer patients' information about their prognosis and determine whether this source of information could explain racial disparities in the accuracy of patients' life expectancy estimates (LEEs). METHODS: Coping With Cancer was a prospective, longitudinal, multisite study of terminally ill cancer patients followed until death. In structured interviews, patients reported their LEEs and the sources of these estimates (ie, medical providers, personal beliefs, religious beliefs, and other). The accuracy of LEEs was calculated through a comparison of patients' self-reported LEEs with their actual survival. RESULTS: The sample for this analysis included 229 patients: 31 black patients and 198 white patients. Only 39.30% of the patients estimated their life expectancy within 12 months of their actual survival. Black patients were more likely to have an inaccurate LEE than white patients. A minority of the sample (18.3%) reported that a medical provider was the source of their LEEs; none of the black patients (0%) based their LEEs on a medical provider. Black race remained a significant predictor of an inaccurate LEE, even after the analysis had been controlled for sociodemographic characteristics and the source of LEEs. CONCLUSIONS: The majority of advanced cancer patients have an inaccurate understanding of their life expectancy. Black patients with advanced cancer are more likely to have an inaccurate LEE than white patients. Medical providers are not the source of information for LEEs for most advanced cancer patients and especially for black patients. The source of LEEs does not explain racial differences in LEE accuracy. Additional research into the mechanisms underlying racial differences in prognostic understanding is needed. Cancer 2016;122:1905-12. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer.

BACKGROUND: Patients' perception of their prognosis has an impact on their decisions about medical care. However, the relations between prognostic understanding and quality of life (QoL) and mood are unknown. The objectives of this study were to assess perceptions of prognosis and preferences for prognostic information among patients with advanced cancer and to explore the associations of prognostic understanding with QoL and mood. METHODS: Fifty patients were assessed within 6 to 12 weeks of initiating chemotherapy for advanced gastrointestinal cancers. A 13-item questionnaire was used to assess patients' information preferences, perceptions of their prognosis and goal of therapy, and communication about end-of-life care. The Functional Assessment of Cancer Therapy-General and the Hospital Anxiety and Depression Scale were used to assess QoL and mood, respectively. RESULTS: Fifty of 62 (80%) consecutive, eligible patients were enrolled. Thirty-eight of 50 patients (75%) wanted to know as many details as possible about their cancer diagnosis and treatment. However, 25 of 50 patients (50%) stated that the goal of therapy was to "cure their cancer," and only 10 of 49 patients (22%) reported having a discussion about end-of-life preferences with their oncologist. Patients who acknowledged their illness as terminal reported lower QoL (P=.005) and higher anxiety (P=.003) compared with those who did not perceive themselves as being terminally ill. CONCLUSIONS: Although patients desired detailed information about their illness, half incorrectly perceived their cancer as curable. Accurate prognostic understanding was associated with lower QoL and worse anxiety. Interventions to improve patients' prognostic understanding while providing adequate psychosocial support are warranted.

Serious Illness Communication in Cirrhosis Care: Tools to Improve Illness Understanding, Prognostic Understanding, and Care Planning.

Patients with cirrhosis frequently experience an unpredictable illness trajectory, with frequent hospitalizations and complications. Along with the uncertain nature of the disease, the possibility of a lifesaving and curative transplant often makes prognostic discussions and future care decisions challenging. Serious illness communication (SIC) refers to supportive communication whereby clinicians assess patients' illness understanding, share prognostic information according to patients' preferences, explore patients' goals, and make recommendations for care that align with these goals. SIC includes 3 key components: (1) illness understanding; (2) prognostic understanding; and (3) care planning. In this piece, we explore current barriers to early implementation of SIC in cirrhosis care and share possible solutions, including adopting a multidisciplinary approach, delivering culturally competent care, and training clinicians in SIC core skills. By use of a case example, we aim to demonstrate SIC in action and to provide clinicians with tools and skills that can be used in practice.

"It kinda has like a mind": Children's and parents' beliefs concerning viral disease transmission for COVID-19 and the common cold.

How people reason about disease transmission is central to their commonsense theories, scientific literacy, and adherence to public health guidelines. This study provided an in-depth assessment of U.S. children's (ages 5-12, N = 180) and their parents' (N = 125) understanding of viral transmission of COVID-19 and the common cold, during the first year of the COVID-19 pandemic. The primary aim was to discover children's causal models of viral transmission, by asking them to predict and explain counter-intuitive outcomes (e.g., asymptomatic disease, symptom delay) and processes that cannot be directly observed (e.g., viral replication, how vaccines work). A secondary aim was to explore parental factors that might contribute to children's understanding. Although even the youngest children understood germs as disease-causing and were highly knowledgeable about certain behaviors that transmit or block viral disease (e.g., sneezing, mask-wearing), they generally failed to appreciate the processes that play out over time within the body. Overall, children appeared to rely on two competing mental models of viruses: one in which viruses operate strictly via mechanical processes (movement through space), and one in which viruses are small living creatures, able to grow in size and to move by themselves. These results suggest that distinct causal frameworks co-exist in children's understanding. A challenge for the future is how to teach children about illness as a biological process without also fostering inappropriate animism or anthropomorphism of viruses.

Scientific and Folk Theories of Viral Transmission: A Comparison of COVID-19 and the Common Cold.

Disease transmission is a fruitful domain in which to examine how scientific and folk theories interrelate, given laypeople's access to multiple sources of information to explain events of personal significance. The current paper reports an in-depth survey of U.S. adults' (N = 238) causal reasoning about two viral illnesses: a novel, deadly disease that has massively disrupted everyone's lives (COVID-19), and a familiar, innocuous disease that has essentially no serious consequences (the common cold). Participants received a series of closed-ended and open-ended questions probing their reasoning about disease transmission, with a focus on causal mechanisms underlying disease contraction, transmission, treatment, and prevention; non-visible (internal) biological processes; and ontological frameworks regarding what kinds of entities viruses are. We also assessed participants' attitudes, such as their trust in scientific experts and willingness to be vaccinated. Results indicated complexity in people's reasoning, consistent with the co-existence of multiple explanatory frameworks. An understanding of viral transmission and viral replication existed alongside folk theories, placeholder beliefs, and lack of differentiation between viral and non-viral disease. For example, roughly 40% of participants who explained illness in terms of the transmission of viruses also endorsed a non-viral folk theory, such as exposure to cold weather or special foods as curative. Additionally, participants made use of competing modes of construal (biological, mechanical, and psychological) when explaining how viruses operate, such as framing the immune system response (biological) as cells trying to fight off the virus (psychological). Indeed, participants who displayed greater knowledge about viral transmission were significantly more likely to anthropomorphize bodily processes. Although comparisons of COVID-19 and the common cold revealed relatively few differences, the latter, more familiar disease elicited consistently lower levels of accuracy and greater reliance on folk theories. Moreover, for COVID-19 in particular, accuracy positively correlated with attitudes (trusting medical scientists and taking the disease more seriously), self-protective behaviors (such as social distancing and mask-wearing), and willingness to be vaccinated. For both diseases, self-assessed knowledge about the disease negatively predicted accuracy. The results are discussed in relation to challenges for formal models of explanatory reasoning.

Illness Understanding and Advance Care Planning in Patients with Advanced Lymphoma.

Background: The prognosis of an aggressive lymphoma can change dramatically following failure of first-line treatment. This sudden shift is challenging for the promotion of illness understanding and advance care planning (ACP). Yet, little is known about illness understanding and ACP in patients with aggressive lymphomas. Objective: To examine illness understanding, rates of engagement in ACP, and reasons for lack of ACP engagement in patients with advanced B cell lymphomas. Design: Cross-sectional observational study. Setting/Subjects: Patients (n = 27) with aggressive B cell lymphomas that relapsed after first- or second-line treatment treated at a single urban academic medical center. Measurements: Participants were administered structured surveys by trained staff to obtain self-report measures of illness understanding (i.e., aggressiveness, terminality, curability) and ACP (i.e., discussions of care preferences, completion of advance directives). Results: The majority of patients reported discussing curability (92.6%), prognosis (77.8%), and treatment goals (88.9%) with their medical team. Yet, less than one-third of patients reported being terminally ill (29.6%) and having incurable disease (22.2%). Most patients had a health care proxy (81.5%) and had decided about do-not-resuscitate status (63%), but the majority had not completed a living will (65.4%) or discussed their care preferences with others (55.6%). Conclusions: The accuracy of lymphoma patients' illness understanding following first-line treatment is difficult to determine due to the potential for cure following transplant. However, this study suggests that a large proportion of patients with advanced B cell lymphomas may underestimate the severity of their illness, despite discussing illness severity with their medical team. Providing patients with information on prognosis, and the ACP process may increase engagement in ACP.

Being present: oncologists' role in promoting advanced cancer patients' illness understanding.

Realistic illness understanding is essential to an advanced cancer patient's ability to make informed medical decisions at the end of life. This study sought to determine whether advanced cancer patients better understood the late stage of their cancer if an oncologist, compared to other members of the care team, was present to discuss their scan results. Data were derived from a multi-institutional, longitudinal cohort study of patients recruited between 2010 and 2015. Patients (n = 209) with late-stage cancers (metastatic cancers that progressed after at least one chemotherapy regimen) were interviewed before and after clinic visits in which scan results were discussed. Patients reported pre- and postvisit if their cancer was at a late stage. Postvisit, patients reported if they discussed scan results with an oncologist or another oncology provider (i.e., oncology fellow, oncology resident, nurse practitioner, nurse, physician's assistant, or other). Logistic regression analysis was used to determine if the presence of an oncologist during scan results discussions differentially predicted the patients' likelihood of postvisit late-stage illness understanding (LSIU). Propensity weighting was used to correct for sociodemographic imbalances between groups, and previsit LSIU and the presence of multiple providers were controlled for in the logistic regression analyses. After propensity-weighted adjustment and controlling for previsit LSIU and the presence of multiple providers, patients were 2.6 times more likely (AOR = 2.6; 95% CI = 1.2, 6.0; P = 0.021) to report that their disease was late stage if an oncologist was present for the scan results discussion compared to if an oncologist was absent. The presence of an oncologist during scan results discussions was associated with a higher likelihood of patients acknowledging being in a late stage of their disease. These results suggest that oncologist involvement in scan results discussions is associated with advanced cancer patients having better prognostic understanding.

Illness understanding in patients with advanced lung cancer: curse or blessing?

Early palliative care (EPC) should be introduced from the start of the treatment of patients with advanced lung cancer. Unfortunately, this is often not integrated in daily oncologic care. This letter wants to emphasize the importance of offering a holistic approach, meaning EPC to optimize quality of life (QoL). Illness understanding is important because patients with better understanding of their disease choose more often for symptom control and less for an aggressive treatment at the end of life. This illness understanding should be achieved during communication with the treating oncologist. Based on the limited available literature about illness understanding, it seems that an EPC program is necessary when breaking bad news, in order to maintain or improve QoL in patients.