Predictors of change in unmet supportive care needs in cancer

Objective: Patient Reported Outcome (PRO) assessments can assist health professionals to tailor their health practices to the individual needs of patients and improve patient care over time. The present study assessed prospective predictors of unmet supportive care needs in cancer patients over a six‐month period. Methods: Participants were recruited from a regional cancer treatment centre in Australia and completed the Supportive Care Needs Survey (SCNS) at recruitment (n=439; 61.4% response rate) and six months follow‐up (n=396). Hierarchical logistic regression was used to identify predictors of change in unmet needs across each supportive care domain. Predictor variables were socio‐demographic, treatment and psychosocial factors including depression, anxiety, social support, and patient satisfaction. Results: Unmet needs were reported by approximately two‐thirds of patients at baseline and half of patients at six months follow‐up. Having unmet needs at baseline was the strongest predictor of unmet needs at six months. Longer time since diagnosis was a consistent predictor of greater unmet needs, associated with change in physical/daily living, psychological and health system and information unmet needs over time. By contrast, a complex relationship was found in that patient satisfaction, psychosocial and treatment characteristics predicted higher needs in some domains and lower needs in others. Conclusions: Unmet supportive care needs persist over time and psychological needs may emerge later in the illness continuum. Interventions to meet the needs of longer term cancer survivors are needed and should closely articulate with reported supportive care needs. Copyright © 2009 John Wiley & Sons, Ltd.     

Companion participation in cancer consultations

Objective: Companions play an important role in cancer care. This investigation compared the communication of unaccompanied patients, accompanied patients, and companions during lung cancer consultations. Factors affecting the active participation of companions were analyzed. Methods: Participants included unaccompanied patients (N=48), accompanied patients (N=84), and companions (N=84) of newly diagnosed lung cancer patients seen at a large southern VA medical center. The consultations were audiotaped, then transcribed. Coded utterances included patients' and companions' active participation (asking questions, expressing concerns, and making assertions) and physicians' use of facilitative communication. Mixed linear regression was used for comparisons of accompanied patients' participation to that of their companions and to determine the independent predictors of companion participation and patient satisfaction. Results: The combined companion plus patient participation did not differ from the participation of unaccompanied patients. Patterns of companion participation varied greatly as almost half the interactions had a relatively passive companion (contributed to less than 40% of the patient plus companion active participation) but 33% of the consultations had an active companion and passive patient. Companions with less active participation accompanied black patients and received proportionally less facilitative communication from physicians. Patient satisfaction was lower when companion and patient had similar levels of participation. Conclusion: Companions vary greatly in their participation in lung cancer visits. Physicians facilitate companion participation through the use of partnership‐building and supportive communication. The companions of black patients were less active than their white counterparts which parallels other research indicating that black patients are often less active than white patients. Such communicative discrepancies could contribute to racial disparities in cancer care. Copyright © 2007 John Wiley & Sons, Ltd.     

A 10-Year Cross-Sectional Analysis of Public,Oncologist, and Patient Attitudes About Lung Cancer and Associated Stigma

IntroductionLung cancer stigma negatively impacts the clinical care and outcomes of those diagnosed, resulting in enduring disparities. The objective of this study was to determine whether attitudes toward lung cancer and the stigmatization of people diagnosed have changed over a decade.MethodsA cross-sectional survey was administered to the general public, oncologists, and people with lung cancer 10 years apart (2008 and 2018) using the same instrument and methodology. The measures of stigma agreement ratings on a five-point Likert scale were compared between 2008 and 2018 for all three sample groups.ResultsIn 2018, a total of 1001 members of the general public, 205 oncologists, and 208 people with lung cancer were enrolled. Improvements were noted over the decade, including the availability of more treatment options. Greater disease awareness was also found, with 94% of the public reporting knowledge of lung cancer (versus 82.5% in 2008, p < 0.0001). However, no change was found in the percentage of the public reporting that patients with lung cancer are at least partially to blame for their illness (60.3% in 2018). In 2018, more people with lung cancer agreed there is a stigma associated with lung cancer (72.1 versus 54.5%, p < 0.001) and that those diagnosed are viewed or treated differently by society in general (69.4% versus 50.8%, p < 0.001).ConclusionsThe results reflect recognition of treatment gains and increased visibility of lung cancer but also highlight that stigma remains a significant problem. Of critical importance to the care of those diagnosed was the unexpected increase in stigma reported by the patient population.     

Help‐seeking behaviour in newly diagnosed lung cancer patients: Assessing the role of perceived stigma

Objective

This study explored help‐seeking behaviours, group identification, and perceived legitimacy of discrimination, and its potential relationship with perceived lung cancer stigma.

Methods

Consecutive consenting adults (n = 274) with a primary diagnosis of lung cancer within the previous 4 months were recruited at 31 outpatient clinics in Australia. A self‐report survey assessed help‐seeking, group identification, perceived legitimacy of discrimination, and perceived lung cancer stigma.

Results

Services providing assistance from health professionals (69.5%) and informational support (68.5%) were more frequently used than emotional‐based support. Only a small proportion (2.6%) of participants were unlikely to seek help from anyone, with the most popular sources of help being the general practitioner (91.0%), and oncologist/treating clinician (81.3%). One‐fifth (21.1%) indicated they identified with being a lung cancer patient, and most did not perceive discrimination against lung cancer patients. Higher perceived lung cancer stigma was significantly associated with greater perceived legitimacy of discrimination (P < 0.001), but not help‐seeking behaviours or group identification.

Conclusions

The relationship between lung cancer stigma and perceived legitimacy of discrimination may guide initiatives to reduce stigma for patients. It is encouraging that perceived stigma did not appear to inhibit help‐seeking behaviours. However, further research in this emerging field is needed to investigate patterns of perceived stigma and help‐seeking over time to identify how and when to offer support services most appropriate to the needs of lung cancer patients.

     

A Longitudinal Investigation of Internalized Stigma,Constrained Disclosure,and Quality of Life Across 12 Weeks in Lung Cancer Patients on Active Oncologic Treatment

Introduction

Internalized lung cancer stigma (i.e., feelings of regret, shame, and self-blame about one’s lung cancer) is related to poorer psychological outcomes. Less is known about how internalized stigma relates to physical and functional outcomes or how constrained disclosure (i.e., avoidance of or discomfort about disclosing one’s lung cancer status to others) relates to well-being. Furthermore, no study has examined whether internalized stigma and constrained disclosure predict changes in well-being for lung cancer patients. This longitudinal study characterized relationships of internalized stigma and constrained disclosure with emotional and physical/functional outcomes.

Self-forgiveness is associated with reduced psychological distress in cancer patients and unmatched caregivers: Hope and self-blame as mediating mechanisms

This study examined the association between self-forgiveness and psychological distress and tested whether self-blame and hope mediated these associations equally for both patients and caregivers. Participants were 38 patients and 44 unmatched caregivers receiving care at a national cancer hospital. Participants completed measures of self-forgiveness, self-blame, hope, and psychological distress. Self-forgiveness was inversely associated with self-blame and psychological distress and positively associated with hope. Self-forgiveness was indirectly associated with psychological distress through hope but not self-blame and more strongly for caregivers than patients. Group differences between patients and caregivers in associations are intriguing and may have implications for improved psychosocial care of cancer patients and support of caregivers.     

Do multidisciplinary team meetings make a difference in the management of lung cancer?

BACKGROUND:

There is limited evidence regarding the effectiveness of multidisciplinary team (MDT) meetings in lung cancer. The objective of this study was to compare the patterns of care for patients with newly diagnosed lung cancer who were presented at a lung cancer MDT meeting with the patterns of care for patients who were not presented.

METHODS:

All patients who had lung cancer newly diagnosed in South West Sydney (SWS) between December 1, 2005, and December 31, 2008, were identified from the local Clinical Cancer Registry. Patient and tumor characteristics and treatment receipt were compared between patients who were and were not presented at MDT meetings. A logistic regression model was constructed to determine predictors for receiving treatment and survival.

RESULTS:

In total, there were 988 patients, including 504 patients who were presented at MDT meetings and 484 who were not presented at MDT meetings. The median patient age was 69 years and 73 years in the MDT group and the non‐MDT group, respectively (P < .01). There was no pathologic diagnosis for 13% of non‐MDT patients compared with 4% of MDT patients (P < .01). Treatment receipt for MDT patients versus non‐MDT patients was 12% versus 13%, respectively, for surgery (P value nonsignificant); 66% versus 33%, respectively, for radiotherapy (P < .001); 46% versus 29%, respectively, for chemotherapy (P < .001); and 66% versus 53%, respectively, for palliative care (P < .001). In patients with good performance status, the MDT group had significantly better receipt of radiotherapy among patients with stage I through IV nonsmall cell lung cancer (NSCLC) and had significantly better receipt of chemotherapy among patients with stage IV NSCLC. MDT discussion was an independent predictor of receiving radiotherapy, chemotherapy, and referral to palliative care but did not influence survival.

CONCLUSIONS:

MDT discussion was associated with better treatment receipt, which potentially may improve quality of life for patients with lung cancer. However, it did not improve survival. Cancer 2011;. © 2011 American Cancer Society.     

Supportive care needs in patients with lung cancer

Introduction: The goal of this study was to characterize the prevalence and intensity of supportive care needs and interest in specific supportive care services among individuals with lung cancer. Method: Participants (n=109) were recruited from two medical centers in Southern California to complete questionnaires on physical and psychological functioning following diagnosis of lung cancer. Results: Participants reported the greatest need in the physical and daily living domain, followed by psychological needs, health system and informational needs, and patient care support needs. The most common unmet need was a lack of energy and tiredness (75%). Higher levels of supportive care needs were associated with worse physical functioning (β=?0.30, p<0.001), greater symptom bother (β=0.25, p=0.008), lower satisfaction with health care (β=?0.24, p=0.002), and higher levels of intrusive thoughts about cancer (β=0.40, p<0.001). The sample was most interested in receiving additional information about their disease and treatment (61.0%), exercise‐related information and support (54.3%), and assistance dealing with fatigue (46.7%). Over 91% expressed interest in at least one specific supportive care service, and 51.4% were interested in one or more psychological services. Conclusion and implications for cancer survivors: Our findings suggest that lung cancer survivors have many unmet needs. Patients who report higher physical distress and intrusive stress symptoms, or lower satisfaction with their health care, may experience the highest level of supportive care need and intervention. Copyright © 2009 John Wiley & Sons, Ltd.     

An examination of the relationship between patient satisfaction with healthcare and quality of life in a geriatric population with cancer in the Southeastern United States

BackgroundUnderstanding factors that impact patient satisfaction with cancer care within the growing population of older adults living with cancer will contribute to tailoring programs that address patient needs and expectations. Further, patient satisfaction is a determinant of healthcare organizations' institutional performance. The purpose of this study was to investigate the relationship between patient satisfaction with care and health-related quality of life (HRQoL) among Medicare recipients with common cancers types (breast, prostate, or lung cancer).MethodsCross-sectional analysis of survey data from 637 Medicare beneficiaries (≥65 years) with breast (n = 304), lung (n = 158), or prostate cancer (n = 175) in twelve hospitals in the Southeastern United States. Participants responded eighteen satisfaction questions across five domains. HRQoL was measured with the Physical Component Summary (PCS) and Mental Component Summary (MCS) scores of the SF-12.v2 instrument.ResultsSF-12 scores were positively associated with satisfaction domain scores. The magnitude of these associations was small with covariate-adjusted effect sizes r ranging from 0.05 to 0.12. Satisfaction scores were highest within the Quality of Care domain and lowest within the Patient Engagement domain.ConclusionsPatient satisfaction domains had only modest association with HRQoL, indicating that these constructs should not be assumed to correlate. Satisfaction domains, including how patients access care, coordinate care, and engage within the healthcare system, were identified as potential areas for improvement. Patient satisfaction assessment across age groups may inform oncology care providers on ways in which their patients perceive the quality of care received, which ultimately affect healthcare organizations' accreditation, ranking, and reimbursement.     

Identifying barriers to cancer survivors sharing their survivorship care plans with their healthcare provider

Purpose

To understand what factors influence whether a cancer survivor will share their survivorship care plan (SCP) with their healthcare provider (HCP).

Methods

We used data from 3231 cancer survivors who utilized the OncoLink SCP resource between 2009 and 2016. Random forest and stepwise regression were used to identify predictors of SCP satisfaction and barriers to survivors sharing their care plans with their HCPs.

Results

Eighty-seven percent of users rated their satisfaction with their SCP as good or better; however, only 70% of survivors planned to share their SCP with their HCP. The most commonly reported reason for not sharing was a feeling that their HCP would not care. Self-reported satisfaction with their SCP was strongest predictor of whether a survivor would share their SCP. Gender, cancer status, number of chemotherapies received, and who was managing their healthcare were all associated with self-reported survivor satisfaction with their SCP.

Conclusions

Survivor satisfaction with SCPs was high, but there was a disconnect in the number of satisfied survivors and the number of survivors planning to share their SCP with their HCP. To bridge this gap, additional prompts that HCPs are expecting this information should be added to the care plans.

Implications for Cancer Survivors

One of the primary functions of survivorship care plans is to improve communication between survivor and healthcare provider. While survivors are overwhelmingly satisfied with their SCP, additional steps are necessary to get survivors to share their SCP with their HCP.

     

Socio‐demographic predictors of high support needs in newly diagnosed breast cancer patients

GRIESSER A.‐C., VLASTOS G., MOREL L., BEAUME C., SAPPINO A.‐P. & HALLER G. (2010) European Journal of Cancer Care
Socio‐demographic predictors of high support needs in newly diagnosed breast cancer patients This study aimed to identify high support needs and their socio‐demographic predictors to improve supportive care for newly diagnosed breast cancer patients. A cross‐sectional study measured patients' needs and unsatisfied support needs by the supportive care needs survey (SCNS‐34), administered after surgery, chemotherapy or radiotherapy. Socio‐demographic, disease and treatment characteristics completed data collection. A total of 308 questionnaires were completed with a response rate of 88%. The most frequent support needs (73.3% of patients) related to information and the highest unsatisfied support needs to the management of emotions and daily life (36.3–39.6% of patients). Younger age predicted high and dissatisfied support needs (P < 0.05). Patients born outside Switzerland or with a lower level of education had more needs in daily living and psychological domains (P < 0.05). Being born outside Switzerland also predicted dissatisfaction with information provided. Being parent was a predictor of significant needs in the daily living domain after adjusting for disease and treatment characteristics (P= 0.01). Therefore, information, psychological and daily living support for newly diagnosed breast cancer patients should be strongly reinforced, particularly in patients being born outside Switzerland, those with children or being younger. For the latter, support in sexuality domain should also be emphasised.     

A Systematic Review of the Impact of Stigma and Nihilism on Lung Cancer Outcomes

ABSTRACT: BACKGROUND: This study systematically review the evidence on the influence of stigma and nihilism on lung cancer patterns of care; patients' psychosocial and quality of life (QOL) outcomes; and how this may link to public health programs. METHODS: Medline, EMBASE, ProQuest, CINAHL and PsycINFO databases were searched. The inclusion criteria were: included lung cancer patients and/or partners or caregivers and/or health professionals (either at least 80% of participants had lung cancer or were partners or caregivers of lung cancer patients, or there was a lung cancer specific sub-group focus or analysis), assessed stigma or nihilism with respect to lung cancer and published in English between 1st January 1999 and 31st January 2011. Trial quality and levels of evidence were assessed. RESULTS: Eighteen articles describing 15 studies met inclusion criteria. The seven qualitative studies were high quality with regard to data collection, analysis and reporting; however most lacked a clear theoretical framework; did not address interviewer bias; or provide a rationale for sample size. The eight quantitative studies were generally of low quality with highly selected samples, non-comparable groups and low participation rates and employed divergent theoretical and measurement approaches. Stigma about lung cancer was reported by patients and health professionals and was related to poorer QOL and higher psychological distress in patients. Clear empirical explorations of nihilism were not evident. There is qualitative evidence that from the patients' perspectives public health programs contribute to stigma about lung cancer and this was supported by published commentary. CONCLUSIONS: Health-related stigma presents as a part of the lung cancer experience however there are clear limitations in the research to date. Future longitudinal and multi-level research is needed and this should be more clearly linked to relevant theory.     

Are cancer patients whose problems are overestimated by nurses less satisfied with their care?

MÅRTENSSON G., CARLSSON M. & LAMPIC C. (2010) European Journal of Cancer Care 19 , 382–392
Are cancer patients whose problems are overestimated by nurses less satisfied with their care? The main aim of the present study was to investigate whether patient–nurse dis/agreement concerning cancer patients' situation was of importance to patients' satisfaction with care. Another aim was to describe cancer patients' satisfaction with care and to investigate its relationship to cancer patients' emotional distress. A consecutive sample of individual patient–nurse pairs (n = 82) was recruited and followed during 3 days. Each pair consisted of a cancer patient newly admitted to an oncological/haematological ward and a nurse responsible for that patient's care. The known phenomenon of nurse overestimation of cancer patients' problems did not appear to be of importance to patients' satisfaction with care. However, patients whose depressive problems were underestimated by nurses were significantly less satisfied with the care they received. Furthermore, anxious and depressed patients were less satisfied with some aspects of the care they received than were the remaining patients. Although the patients' ratings and experiences of received care indicated a high degree of satisfaction, the patients also expressed negative experiences of care. To improve the quality of cancer care, nurses need to improve their ability to identify cancer patients' emotional distress if they are to satisfy patients' needs.     

Multilevel Opportunities to Address Lung Cancer Stigma across the Cancer Control Continuum

The public health imperative to reduce the burden of lung cancer has seen unprecedented progress in recent years. Fully realizing the advances in lung cancer treatment and control requires attention to potential barriers in their momentum and implementation. In this analysis, we present and evaluate the argument that stigma is a highly significant barrier to fulfilling the clinical promise of advanced care and reduced lung cancer burden. This evaluation of the stigma of lung cancer is based on a multilevel perspective that incorporates the individual, persons in the individual's immediate environment, the health care system, and the larger societal structure that shapes perceptions and decisions. We also consider current interventions and interventional needs within and across aspects of the lung cancer continuum, including prevention, screening, diagnosis, treatment, and survivorship. Current evidence suggests that stigma detrimentally affects psychosocial, communication, and behavioral outcomes over the entire lung cancer control continuum and across multiple levels. Interventional efforts to alleviate stigma in the context of lung cancer show promise, yet more work is needed to evaluate their impact. Understanding and addressing the multilevel role of stigma is a crucial area for future study to realize the full benefits offered by lung cancer prevention, control, and treatment. Coordinated, interdisciplinary, and well-conceptualized efforts have the potential to reduce the barrier of stigma in the context of lung cancer and facilitate demonstrable improvements in clinical care and quality of life.     

Lung cancer patients with postoperative normalization of serum carcinoembryonic antigen level: Predictive factors for re-elevation

Background: Postoperative normalization of serum carcinoembryonic antigen (CEA) level has been reported to be a favorable prognostic predictor in lung cancer. However, serum CEA levels of some patients’ groups re‐elevate during their postoperative course. The aim of study was to find predictors of CEA re‐elevation in patients with preoperative high and postoperative normal CEA. Methods: Sixty‐one consecutive lung cancer patients with preoperative high serum CEA level (>5 ng/mL) and postoperative normal level were reviewed retrospectively. Among these patients, serum CEA levels of 23 patients re‐elevated during their postoperative course. We compared patients with and without re‐elevation of serum CEA levels. Results: The 5‐year survival of patients with and without re‐elevation of serum CEA level was 13.20% and 88.68%, respectively (P < 0.0001). There are significant differences in pN2 status and CEA level in pleural lavage fluid between patients with and without re‐elevation of serum CEA level. Conclusions: Our results showed that pN2 status and lavage CEA level were related to the re‐elevation of serum CEA level.     

Psychological wellness and health‐related stigma: a pilot study of an acceptance‐focused cognitive behavioural intervention for people with lung cancer

People with lung cancer experience health‐related stigma that is related to poorer psychosocial and quality of life outcomes. The present Phase 1 study applied mixed methods to test the acceptability of an acceptance‐focused cognitive behavioural intervention targeting stigma for this patient group. Fourteen lung cancer patients completed a 6‐week Psychological Wellness intervention with pre‐ and post‐test outcome measures of psychological and cancer‐specific distress, depression, health‐related stigma and quality of life. In‐depth interviews applying interpretative phenomenological analysis assessed participants' experiences of the intervention. Moderate to large improvements were observed in psychological (η_p² = 0.182) and cancer‐specific distress (η_p² = 0.056); depression (η_p² = 0.621); health‐related stigma (η_p² = 0.139). In contrast, quality of life declined (η_p² = 0.023). The therapeutic relationship; self‐management of distress; and relationship support were highly valued aspects of the intervention. Barriers to intervention included avoidance and practical issues. The lung cancer patients who completed the Psychological Wellness intervention reported improvements in psychological outcomes and decreases in stigma in the face of declining quality of life with patients reporting personal benefit from their own perspectives. A randomised controlled trial is warranted to establish the effectiveness of this approach.