Evaluating unmet needs in patients undergoing surgery for colorectal cancer: a patient reported outcome measures study.

AIM: Patient reported outcome measures (PROMs) are self-reported measures of patients' health status or health-related quality of life at a single point in time. We aimed to evaluate the use of a colorectal PROM and conducted a focus group to further explore this and other unmet needs in our patient population treated surgically for colorectal cancer. METHOD: A multidisciplinary research group consisting of colorectal surgeons, nurse specialists, psychologists, sociologists and patient representatives devised a composite tool of new and existing outcome measures which was piloted in our local population (n = 35). Participants were subsequently invited to attend a semi-structured focus group during which the PROM was reviewed and an unmet needs analysis was performed. Thematic analysis of focus group transcripts was undertaken for emergent themes. RESULTS: Initial consensus was for a tool including the EQ-5D, Functional Assessment of Cancer Therapy - Colorectal (FACT-C), the distress thermometer, a validated measure of stigma, an unmet needs analysis, and questions assessing the psychological impact of cancer. Median and interquartile range values suggested that all metrics were discriminatory with the exception of FACT-C. All participants agreed that the tool was acceptable and reflected the current state of their health and emotions. Thematic analysis of focus group transcripts identified four major themes: physical symptoms, emotional response, information provision and coping mechanisms. CONCLUSION: Through expert consensus, local piloting and patient focus groups we have evaluated a novel PROM for colorectal cancer. Furthermore, through our direct engagement with patients we have identified several unmet needs which we are currently exploring within the clinical service.

Factors associated with intentional and unintentional non-adherence to adjuvant endocrine therapy following breast cancer.

Adherence to adjuvant endocrine therapy (AET) following breast cancer is known to be suboptimal despite its known efficacy in reducing recurrence and mortality. This study aims to investigate factors associated with non-adherence and inform the development of interventions to support women and promote adherence. A questionnaire survey to measure level of adherence, side effects experienced, beliefs about medicine, support received and socio-demographic details was sent to 292 women 2-4 years post breast cancer diagnosis. Differences between non-adherers and adherers to AET were explored, and factors associated with intentional and unintentional non-adherence are reported. Approximately one quarter of respondents, 46 (22%), were non-adherers, comprising 29 (14%) intentional non-adherers and 17 (8%) unintentional non-adherers. Factors significantly associated with intentional non-adherence were the presence of side effects (p < .03), greater concerns about AET (p < .001) and a lower perceived necessity to take AET (p < .001). Half of the sample (105/211) reported that side effects had a moderate or high impact on their quality of life. Factors associated with unintentional non-adherence were younger age (<65) (p < .001), post-secondary education (p = .046) and paid employment (p = .031). There are distinct differences between intentional non-adherence and unintentional non-adherence. Differentiation between the two types of non-adherence may help tailor support and advice interventions.

Fear of cancer recurrence in oral and oropharyngeal cancer patients: An investigation of the clinical encounter.

Fear of cancer recurrence (FCR) is common among individuals treated for cancer. Explorations of how this fear is expressed within an oncology setting and responded to are currently lacking. The aim was to investigate how head and neck cancer survivors in follow-up consultations express FCR, investigate how a healthcare professional addresses recurrence fears, and examine how survivors experience this interaction. We recorded the follow-up consultations of those participants who have reported FCR as a concern on the Patient Concerns Inventory. We also conducted a follow-up phone interview with the participants. We analysed the transcripts using thematic analysis. Five men and six women were recruited, aged 55-87 (mean age = 64). Follow-up consultation analyses revealed that the consultant used "normalising FCR," "reassurance," and "offer of referral to a counsellor." Interviews revealed themes around how they coped with FCR, relevance of personal history on FCR, and the impact of feeling gratitude towards the consultant on expression of FCR. Analyses indicate that patients may feel reluctant to raise their FCR with their clinician for fear of appearing "ungrateful" or of damaging a relationship that is held in high esteem. Findings indicate the initiation of FCR with patients can be beneficial for patient support.

The cancer care experiences of gay, lesbian and bisexual patients: A secondary analysis of data from the UK Cancer Patient Experience Survey.

Understanding the effects of population diversity on cancer-related experiences is a priority in oncology care. Previous research demonstrates inequalities arising from variation in age, gender and ethnicity. Inequalities and sexual orientation remain underexplored. Here, we report, for the first time in the UK, a quantitative secondary analysis of the 2013 UK National Cancer Patient Experience Survey which contains 70 questions on specific aspects of care, and six on overall care experiences. 68,737 individuals responded, of whom 0.8% identified as lesbian, gay or bisexual. Controlling for age, gender and concurrent mental health comorbidity, logistic regression models applying post-estimate probability Wald tests explored response differences between heterosexual, bisexual and lesbian/gay respondents. Significant differences were found for 16 questions relating to: (1) a lack of patient-centred care and involvement in decision-making, (2) a need for health professional training and revision of information resources to negate the effects of heteronormativity and (3) evidence of substantial social isolation through cancer. These findings suggest a pattern of inequality, with less positive cancer experiences reported by lesbian, gay and (especially) bisexual respondents. Poor patient-professional communication and heteronormativity in the healthcare setting potentially explain many of the differences found. Social isolation is problematic for this group and warrants further exploration.

Psychological interventions for patients with cancer: psychological flexibility and the potential utility of Acceptance and Commitment Therapy.

Cancer is an illness affecting patients' physical and psychosocial well-being: high numbers report problematic levels of distress at many points through diagnosis, treatment and survivorship. Conclusive evidence for the long-term benefits of psychological interventions is lacking and this may be because (1) they employ a too limited scope of underlying therapeutic model; or (2) that they are too focused on improving psychopathological outcomes. Acceptance and Commitment Therapy (ACT) may add components not emphasised elsewhere and may provide a more suitable model of adjustment and coping. Following a comprehensive literature search a theoretical and conceptual discussion of the potential for ACT-based oncology interventions is presented. Only a small number of studies have purposively studied the application of ACT within the cancer setting, but this nonetheless presents useful pilot data. The data demonstrate potential clinical- and cost-effectiveness for a range of patients, including those with psychological comorbidity. Within the context of wider cancer adjustment, ACT offers an intervention framework to appropriately build upon the strong empirical base already established for Mindfulness within this specific patient population. The evidence available suggests that the underlying framework of ACT offers an intervention model that is potentially more suited to the individualistic nature of cancer adjustment.

Investigating the cognitive precursors of emotional response to cancer stress: re-testing Lazarus's transactional model.

OBJECTIVES: Lazarus's Transactional Model of stress and coping underwent significant theoretical development through the 1990s to better incorporate emotional reactions to stress with their appraisal components. Few studies have robustly explored the full model. This study aimed to do so within the context of a major life event: cancer diagnosis. DESIGN: A repeated measures design was used whereby data were collected using self-report questionnaire at baseline (soon after diagnosis), and 3- and 6-month follow-up. METHODS: A total of 160 recently diagnosed cancer patients were recruited (mean time since diagnosis = 46 days). Their mean age was 64.2 years. Data on appraisals, core-relational themes, and emotions were collected. Data were analysed using both Spearman's correlation tests and multivariate regression modelling. RESULTS: Longitudinal analysis demonstrated weak correlation between change scores of theoretically associated components and some emotions correlated more strongly with cognitions contradicting theoretical expectations. Cross-sectional multivariate testing of the ability of cognitions to explain variance in emotion was largely theory inconsistent. CONCLUSIONS: Although data support the generic structure of the Transactional Model, they question the model specifics. Larger scale research is needed encompassing a wider range of emotions and using more complex statistical testing. STATEMENT OF CONTRIBUTION: WHAT IS ALREADY KNOWN ON THIS SUBJECT?: • Stress processes are transactional and coping outcome is informed by both cognitive appraisal of the stressor and the individual's emotional response (Lazarus & Folkman, 1984). • Lazarus (1999) made specific hypotheses about which particular stress appraisals would determine which emotional response, but only a small number of these relationships have been robustly investigated. • Previous empirical testing of this theory has been limited by design and statistical limitations. WHAT DOES THIS STUDY ADD?: • This study empirically investigates the cognitive precedents of a much larger range of emotional outcomes than has previously been attempted in the literature. • Support for the model at a general level is established: this study demonstrates that both primary and secondary appraisals, and core-relational themes are important variables in explaining variance in emotional outcome. • The specific hypotheses proposed by Lazarus (1999) are not, however, supported: using data-driven approaches we demonstrate that equally high levels of variance can be explained using entirely different cognitive appraisals than those hypothesized.

Anxiety in recovery from severe burn injury: an experimental comparison.

Adjustment to burn injury is a slow process that often results in high distress and anxiety. This study aimed to investigate the impact on anxiety of viewing various types of photographic stimuli (including burn injuries), comparing a burn-injured and control sample. An experimental design was used comparing those recovering from a burn injury with age- and gender-matched controls. Thirty participants from a burns support group and their matched controls were asked to complete a trait anxiety measure (STAI Y-2). Participants then completed the state anxiety measure (STAI Y-1) after viewing different types of photographic stimuli (burn injuries, uninjured body parts, neutral) under controlled experimental conditions. Results demonstrated significant differences in anxiety levels between groups with respect to trait anxiety and state anxiety after each experimental condition. Age of injury was also found to be a significant influence over trait anxiety. A significant effect of experimental condition was found, as was a significant interaction between group and condition. Those with burn injuries were more anxious than controls - a difference that was further exaggerated when participants viewed photographs of burned or uninjured body parts in an experimental setting.