Psychometric validation of the 15-item Patient Health Questionnaire - Anxiety and Depression Scale (PHQ-ADS) to assess psychological distress in breast cancer survivors.

OBJECTIVE: Psychological distress persists amongst breast cancer survivors, so reliable assessment of symptoms is essential. The Patient Health Questionnaire Anxiety and Depression Scale (PHQ-ADS) is a composite measure of depression and anxiety and has been used to measure distress. This study aimed to evaluate the psychometric properties of the PHQ-ADS within breast cancer survivors. METHOD: Breast cancer survivors (N = 280) were recruited online and followed up at 12-months. Depression (PHQ-8) and anxiety (GAD-7) items formed the composite PHQ-ADS score. Additional measures included: distress thermometer (convergent validity), fear of cancer recurrence and COVID distress (discriminant validity), and self-compassion (predictive validity). Confirmatory factor analysis (CFA) using weighted least squares mean and variance adjusted estimation was undertaken. RESULTS: One, two, and bifactor models underlying the PHQ-ADS were evaluated. The bifactor model had the most appropriate model fit overall. Omega hierarchical for the general distress factor was 0.914, accounting for 82% of explained variance. This suggests the PHQ-ADS is sufficiently unidimensional to warrant use of a total composite score. The PHQ-ADS demonstrated strong convergent and moderate discriminant validity. Self-compassion was an independent predictor of distress at 12-months. CONCLUSIONS: The PHQ-ADS is a valid measure for psychological distress in breast cancer survivors prescribed hormone therapy.

Acceptance and commitment therapy processes and their association with distress in cancer: a systematic review and meta-analysis.

Around 42% of individuals with cancer experience distress. Acceptance and commitment therapy (ACT) can reduce distress, but effects are small, and mechanisms unclear. This review aimed to identify associations between ACT processes and distress in cancer. Search terms included cancer, ACT processes, self-compassion, and distress. Six online databases and grey literature were searched until March 2022. Of 6555 papers screened, 108 studies were included with 17,195 participants. Five meta-analyses of 77 studies were conducted. Random effects meta-analyses of correlations revealed higher scores on flexible processes (acceptance, present moment awareness, self-compassion) were associated with lower distress (rpooled = -0.24, -0.39, -0.48, respectively); whilst higher scores on inflexible processes (experiential avoidance, cognitive fusion) were associated with higher distress (rpooled = 0.58, 0.57, respectively). Meta-analyses displayed moderate-to-high heterogeneity with most studies assessed as low risk of bias. Meta-regressions revealed no significant moderators (stage, time since diagnosis, gender and age). This review provides a theoretically aligned evidence base for associations between ACT processes and distress in cancer, supporting elements of ACT theory and providing targeted directions for intervention development. Due to limited evidence, future research should focus on self-as-context, values and committed action and conduct mediation analysis in controlled trials of ACT processes on distress in cancer.

An online acceptance, commitment, and self-compassion based treatment to decrease psychological distress in people with type 2 diabetes: A feasibility randomised-controlled trial.

Background and purpose: This study explored the feasibility and acceptability of conducting a larger trial of a self-guided, online self-compassion and acceptance and commitment therapy (ACT) focused treatment among people with type 2 diabetes (T2D) to decrease psychological distress. Materials and methods: This study was a two-arm, parallel, feasibility randomised controlled trial with nested qualitative methods. UK adults with T2D were randomly (1:1) allocated to a five-week online self-compassion and ACT treatment or waitlist control. Information regarding recruitment, trial retention, and treatment completion was collected, and post-treatment semi-structured interviews were conducted to assess feasibility and acceptability. Self-report measures of psychological distress (depression, anxiety, diabetes distress) and potential treatment processes (self-compassion and psychological flexibility) were completed as secondary feasibility outcomes. Results: Fifty-five (60.44 %) out of 91 people who accessed the study link were eligible to participate. Of these, 33 eligible participants (60 %) were randomly assigned to treatment (n = 19) or control arms (waitlist; n = 14). While treatment completion was 47.37 %, trial retention rates were 39.39 % (5-week follow-up) and 21.2 % (9-week follow-up). Secondary feasibility outcomes of treatment effect estimates are difficult to interpret in light of low treatment completion and trial retention rates. Conclusion: A larger trial of the self-guided, online self-compassion treatment to decrease psychological distress in people with T2D may be beneficial, but it has limited feasibility in its current form. Further efforts are needed to improve treatment acceptability of online self-compassion and ACT focused treatment and trial procedures.

Self-Reported Worries in Young People During the COVID-19 Pandemic.

Purpose: COVID-19 pandemic has had long-standing consequences for all aspects of life. Although young people appear less susceptible to severe forms of physical illness due to the coronavirus, they have not escaped unscathed from its' psychological impacts. The present study measured the content of worries in young people residing in the UK during the pandemic and how it varied with sociodemographic factors. Methods: Between May and December 2020, UK-residing participants aged 12-25 years completed an online survey that presented participants with free-text fields to describe their top three worries over the last two weeks, in addition to demographic and other information. Cross-sectional data from 2560 participants (Males = 767; Female = 1793) was analyzed. Results: Irrespective of sociodemographic, a majority of the participants reported worries related to academics, followed by social relationships, own physical health, social and work routines, and physical health of others. Significantly more females reported concerns about academics, finances, physical health, social and work routines, social relationships, mental health and emotions, and physical health of others. Expectedly, more older (18-25 years) than younger (12-17 years) participants reported concerns about career-prospects and finances, while more younger than older ones were worried about academics (98.41% vs. 80.90%). With respect to financial worries, a higher percentage of BAME (Black, Asian and Minority Ethnic) communities in the UK reported such worries. Ethnicity significantly predicted more worries about social relationships among White than BAME participants. Significant differences also existed across different SES groups regarding endorsement of a particular category of worry. Conclusion: These findings highlight the need for tailored interventions depending on the major concerns for young people of different ages, sexes, ethnicities, and SES. Supplementary Information: The online version contains supplementary material available at 10.1007/s10608-023-10396-3.

A 12-month longitudinal study examining the shared and unique contributions of self-compassion and psychological inflexibility to distress and quality of life in people with Type 2 Diabetes.

OBJECTIVES: Self-compassion and psychological flexibility appear to benefit wellbeing and quality of life (QoL) in the general population and in people with long-term conditions like Type 2 Diabetes (T2D). However, both variables share similarities and their unique roles in relation to distress and QoL in people with diabetes over time are not clear. DESIGN: This was a longitudinal study with online assessments of self-compassion, psychological inflexibility, distress (depression, anxiety, diabetes-distress), and QoL at baseline (T1) and six (T2) and 12 months (T3). METHODS: In total, 173 UK adults with T2D completed baseline questionnaires; T2 and T3 follow-ups were completed by 82 and 52 participants, respectively. Correlations were conducted to understand the relationships between variables at each time point. Hierarchical regressions were conducted to understand the unique predictive role of baseline self-compassion and psychological inflexibility in relation to distress and QoL at T2 and T3, controlling for age and baseline distress and QoL. RESULTS: There were large significant negative correlations between self-compassion and psychological inflexibility (r > -0.50), and both had significant large correlations with distress (r > -0.50) but not QoL across time points. Regressions indicated that psychological inflexibility uniquely predicted depression (T2) and anxiety symptoms (T2 and T3) and QoL (T3). Self-compassion did not uniquely predict any of the outcomes. CONCLUSIONS: Psychological inflexibility may play an important role in distress in T2D, but prospective studies with larger samples are needed to replicate these findings. Given the overlap between psychological inflexibility and self-compassion, treatments targeting either variable may be useful.

Patients' and carers' perspective of the impact of heart failure on quality of life: a qualitative study.

Heart failure (HF) is a syndrome associated with high mortality and morbidity. HF patients tend to be at a high risk of poor clinical and psychosocial outcomes. This study aimed to capture patients' and carers perspectives of HF, the impact on their health reported QoL, and the factors associated with their poor health outcomes. To explore HF patients' and carers' views on their QoL since diagnosis. This study used a cross-sectional, qualitative design with semi-structured interviews conducted with participating patients and carers. Thirteen adults (> 18 years) with HF and 21 carers were interviewed over the telephone, following a semi-structured interview schedule. Interviews were transcribed verbatim and analysed using inductive thematic analysis. Three main themes were identified, with an overarching theme . Themes included impact on patients' lifestyle including diet, smoking and inability to part-take in social activities, adjusting to HF diagnosis and co-morbidity management, and psychological/mental health issues such as anxiety and depression. Patients with HF are at high-risk of various issues which can negatively impact their QoL. Additionally, Carers play a vital role in the management of HF patients. Effective patient centred care and better communication between patients, carers and healthcare professionals is vital in HF management.

Disparities in access to mobile devices and e-health literacy among breast cancer survivors.

BACKGROUND: The number of e-health interventions developed for breast cancer survivors continues to increase. However, issues with engagement and retention are common. This study aimed to explore e-health literacy rates and access to smartphones and tablets in a large sample of breast cancer survivors. METHODS: In study 1, women were recruited from outpatient breast clinics across England and Wales. Eligible women were asked to complete a questionnaire pack to assess their access to devices and their e-health literacy. Multiple regression analyses were run to assess the relationship between technology access and e-health literacy with sociodemographic variables such as age, social deprivation, and education. Study 2 presents a smaller sample recruited through social media who answered a questionnaire relating to use of mobile devices and e-health, and apps. RESULTS: Two thousand nine women participated in the study. Seventy-one percent had access to a smartphone, 54% had access to a tablet, and 20% did not have access to either device. Multiple logistic regressions showed that women who were younger, had higher levels of education, and who were from less deprived areas were more likely to have access to either device. Poorer e-health literacy was associated with being older, having less education, and not having access to a mobile device. CONCLUSIONS: Whilst the results show relatively widespread access to mobile devices, there is evidence of a digital divide across some groups. Online interventions should be developed with consideration of individuals who are less e-health-literate and less technologically adept in order to increase the likelihood of engagement.

Atrial fibrillation, quality of life and distress: a cluster analysis of cognitive and behavioural responses.

PURPOSE: Few studies have examined specific cognitive and behavioural responses to symptoms, which may impact health-related outcomes, in conjunction with illness representations, as outlined by the Common-Sense-Model. Patients with atrial fibrillation (AF) report poor quality-of-life (QoL) and high distress. This cross-sectional study investigated patterns/clusters of cognitive and behavioural responses to illness, and illness perceptions, and relationships with QoL, depression and anxiety. METHODS: AF patients (N = 198) recruited at cardiology clinics completed the AF-Revised Illness Perception Questionnaire, Atrial-Fibrillation-Effect-on-Quality-of-Life Questionnaire, Patient Health Questionnaire-8 and Generalized Anxiety Disorder Questionnaire. Cluster analysis used Ward's and K-means methods. Hierarchical regressions examined relationships between clusters with QoL, depression and anxiety. RESULTS: Two clusters of cognitive and behavioural responses to symptoms were outlined; (1) 'high avoidance'; (2) 'low symptom-focussing'. Patients in Cluster 1 had lower QoL (M = 40.36, SD = 18.40), greater symptoms of depression (M = 7.20, SD = 5.71) and greater symptoms of anxiety (M = 5.70, SD = 5.90) compared to patients in Cluster 2 who had higher QoL (M = 59.03, SD = 20.12), fewer symptoms of depression (M = 3.53, SD = 3.56) and fewer symptoms of anxiety (M = 2.56, SD = 3.56). Two illness representation clusters were outlined; (1) 'high coherence and treatment control', (2) 'negative illness and emotional representations'. Patients in Cluster 2 had significantly lower QoL (M = 46.57, SD = 19.94), greater symptoms of depression (M = 6.12, SD = 5.31) and greater symptoms of anxiety (M = 4.70, SD = 5.27), compared with patients in Cluster 1 who had higher QoL (M = 61.52, SD = 21.38), fewer symptoms of depression (M = 2.85, SD = 2.97) and fewer symptoms of anxiety (M = 2.16, SD = 3.63). Overall, clusters of cognitive and behavioural responses to symptoms, and illness perceptions significantly explained between 14 and 29% of the variance in QoL, depression and anxiety. CONCLUSION: Patterns of cognitive and behavioural responses to symptoms, and illness perceptions are important correlates of health-related outcomes in AF patients.

A Systematic Review of the Effectiveness of Self-Compassion-Related Interventions for Individuals With Chronic Physical Health Conditions.

Self-compassion, defined as a mindful way of coping with pain and suffering by showing kindness, care, and concern towards the self, may improve psychological adjustment in people living with a chronic physical health condition (CPHC). Various studies illustrate that self-compassion is associated with positive outcomes in general. The aim of this systematic review is to establish the effect of compassion-related therapies on self-compassion specifically in people with CPHCs. Secondary aims are to (a) establish the effect on other psychological and physiological outcomes and (b) explore the relative effectiveness of different therapy types among those identified. Cochrane, Embase, Medline, PsycINFO, and CINAHL databases were searched using "compassion" AND "chronic disease" AND "psychological outcomes" and their synonyms, from 2004 to March 2019. Eligible studies had an experimental design using a self-compassion scale with an adult population. Risk of bias (RoB) was assessed using the Cochrane RoB tool. Effect sizes were calculated for study outcomes. Fifteen studies, including a total of 1,190 participants, 7 different CPHCs, and 11 types of therapies, were included in the review. Nearly all included therapies significantly increased self-compassion with medium to large effect sizes, and reported positive outcomes, such as decreased depression. None of the therapy types appeared clearly superior to the others. Findings from this review show that included therapies increased self-compassion and improved various outcomes, which may represent clinically significant benefits for patients. However, there is a need to further understand how self-compassion exerts its benefits and determine the best methods to increase self-compassion.

Using Virtual Technology for Fear of Medical Procedures: A Systematic Review of the Effectiveness of Virtual Reality-Based Interventions.

BACKGROUND: Innovations in virtual reality (VR) technologies have improved the adaptability of its use in therapeutic settings, and VR has shown to be a promising treatment for fear of medical procedures, with research increasing in this area in recent years. PURPOSE: This review aims to collate evidence for the impact of VR on fear of medical procedures. METHODS: CENTRAL (Cochrane), MEDLINE, EMBASE, and PsychINFO databases were searched up to October 2020. A mix of experimental and case-control studies were included for review, which evaluated the effectiveness of VR for fear, anxiety, and pain of medical procedures for people with needle phobia, dental phobia, claustrophobia of medical scans, and burn wound care anxiety. Risk of bias (RoB) was assessed by Cochrane and ROBINS-I tools. RESULTS: Twenty-eight studies were selected. Some studies included mixed participant groups of young people adults. The interventions varied, with VR used for distraction, hypnosis, or exposure. These were shown to be effective for reducing fear of medical procedures. However, effectiveness for blood-injection-injury phobias and burn wound care patients was unclear. CONCLUSIONS: Evidence on the effectiveness of VR suggests that it does decrease fear of medical procedures in some situations. However, the RoB assessment illustrated a poor quality of studies across those included in this review, limiting the ability to draw firm general conclusions from the study findings. There is a need for further research exploring the use of VR technologies in the management of anxiety in physical health care settings.

Development of a self-management intervention to improve tamoxifen adherence in breast cancer survivors using an Intervention Mapping framework.

OBJECTIVE: Up to 50% of women prescribed tamoxifen do not take it as prescribed for the full duration, which increases risk of recurrence and mortality. The current paper describes the development of a self-management intervention aiming to improve adherence in breast cancer survivors taking tamoxifen. METHODS: The intervention was developed following an Intervention Mapping approach. The content of the intervention was determined by theories of health behaviour and empirical evidence. Development was an iterative process involving input from expert researchers, clinicians and patient representatives. RESULTS: The intervention was designed to improve both intentional and unintentional non-adherence. Key features included modifying unhelpful illness and treatment beliefs, improving confidence for coping with side effects and developing strategies for remembering to take tamoxifen. CONCLUSION: Intervention Mapping proved a useful tool for developing an intervention which is grounded in theory and empirical evidence. The intervention has the potential to improve adherence in breast cancer survivors but needs to be trialled before the effectiveness of the intervention can be determined.

A systematic review of psychological, clinical and psychosocial correlates of perceived food intolerance.

OBJECTIVE: Perceived food intolerance (PFI) is a distressing condition reported by 3% - 35% of individuals, whereas prevalence of food allergy is 0.9%-3%. The present paper aims to systematically review the evidence for psychological, clinical and psychosocial factors associated with PFI in order to advance the current understanding. METHODS: Articles published from 1970 until October 2020 were identified. Case-control, prospective cohort, cross-sectional and retrospective studies published in English that a) included a subject population of adults over 18 with PFI and b) examined psychological, clinical and/or psychosocial factors of PFI were reviewed against inclusion criteria. Methodological quality was assessed, data extracted, and a narrative synthesis conducted. RESULTS: Of 2864 abstracts identified, thirty-six articles met inclusion criteria. Evidence consistently found PFI is associated with female sex, and individuals with PFI often report physical health complaints including gastrointestinal and extraintestinal symptoms, and gastrointestinal and atopic conditions. Evidence for an association between psychological factors and PFI was inconsistent, although some suggested increased levels of common mental disorders and distress. Findings regarding psychosocial factors were mixed and sociodemographic data were infrequently collected. CONCLUSIONS: PFI is associated with female sex and gastrointestinal and extraintestinal complaints. Limited high-quality evidence supports the role of psychological factors associated with PFI. High-quality research using prospective and longitudinal designs with multivariate analyses is needed. Future research should explore modifiable psychological factors as potential targets for intervention and identify clinical and psychosocial risk factors of PFI to aid in formulating a biopsychosocial model of PFI.

Examining Adherence to Medication in Patients With Atrial Fibrillation: The Role of Medication Beliefs, Attitudes, and Depression.

BACKGROUND/OBJECTIVES: This study examined whether beliefs about medicines, drug attitudes, and depression independently predicted anticoagulant and antiarrhythmic adherence (focusing on the implementation phase of nonadherence) in patients with atrial fibrillation (AF). METHODS: This cross-sectional study was part of a larger longitudinal study. Patients with AF (N = 118) completed the Patient Health Questionnaire-8. The Beliefs about Medicines Questionnaire, Drug Attitude Inventory, and Morisky-Green-Levine Medication Adherence Scale (self-report adherence measure), related to anticoagulants and antiarrhythmics, were also completed. Correlation and multiple logistic regression analyses were conducted. RESULTS: There were no significant differences in nonadherence to anticoagulants or antiarrhythmics. Greater concerns (r = 0.23, P = .01) were significantly, positively associated with anticoagulant nonadherence only. Depression and drug attitudes were not significantly associated with anticoagulant/antiarrhythmic adherence. Predictors reliably distinguished adherers and nonadherers to anticoagulant medication in the regression model, explaining 14% of the variance, but only concern beliefs (odds ratio, 1.20) made a significant independent contribution to prediction (χ = 11.40, P = .02, with df = 4). When entered independently into a regression model, concerns (odds ratio, 1.24) significantly explained 10.3% of the variance (χ = 7.97, P = .01, with df = 1). Regressions were not significant for antiarrhythmic medication (P = .30). CONCLUSIONS: Specifying medication type is important when examining nonadherence in chronic conditions. Concerns about anticoagulants, rather than depression, were significantly associated with nonadherence to anticoagulants but not antiarrhythmics. Anticoagulant concerns should be targeted at AF clinics, with an aim to reduce nonadherence and potentially modifiable adverse outcomes such as stroke.

Effectiveness of social-psychological interventions at promoting breastfeeding initiation, duration and exclusivity: a systematic review and meta-analysis.

Evidence for the health benefits of breastfeeding is well substantiated but breastfeeding uptake and duration remains low worldwide. Individual level breastfeeding promotion programmes are behavioural interventions, targeting malleable social-psychological processes to change behaviour. This systematic review aimed to investigate whether such interventions are effective at improving breastfeeding initiation, duration and exclusivity, and breastfeeding support. A three-stage search strategy identified eligible articles from six databases. Nine controlled-clinical trials and 11 quasi-experimental trials were included. Random-effects meta-analyses identified significant improvements in rates of breastfeeding initiation (N = 2,213; OR = 2.32, 95% CI [1.33, 4.03], p = .003; I2 = 0%, p = .966) and suggested improved exclusive breastfeeding rates up to six months postpartum (N = 3,671; OR = 1.84, 95% CI [1.38, 2.45], p < .001; I2 = 68.7%, p < .001). After considering small-sample effects, estimates for exclusive breastfeeding across the postpartum period were non-significant. There were no improvements in women maintaining any (i.e., non-exclusive) breastfeeding to one, two, three, four or six months postpartum (N = 4,153; OR = 0.88, 95% CI [0.72, 1.09], p = .253). Evidence for improvements in perceived and actual breastfeeding support was limited. Sub-group analyses suggest standalone postnatal interventions targeting first-time mothers may support breastfeeding uptake. Findings should be interpreted cautiously as the quality of evidence for each outcome was low with a high risk of bias. Future efforts to support women to breastfeed should assimilate behaviour change research, with process evaluation to identify effective processes to inform a high-quality evidence-base for implementation in practice.

Nonadherence to tamoxifen in breast cancer survivors: A 12 month longitudinal analysis.

OBJECTIVE: Previous research has shown that up to 50% of breast cancer survivors prescribed tamoxifen do not take it as recommended, which is associated with increased risk of recurrence and mortality. Little research has attempted to identify modifiable psychosocial factors associated with tamoxifen nonadherence. This study aimed to examine how tamoxifen adherence rates change over a year and to identify modifiable predictors of nonadherence. METHOD: Three hundred and forty-five breast cancer survivors who were in their first year of tamoxifen prescription were sent questionnaires at 4 points over a 12-month period. Questionnaires assessed demographic and clinical factors, side effects, beliefs about the illness and medication, social support, distress and tamoxifen adherence. Adherence was assessed using the Medication Adherence Rating Scale. Latent Growth Modeling was used to identify predictors of tamoxifen nonadherence. RESULTS: Reported rates of nonadherence increased over time (37-48%). Several demographic, clinical, and psychosocial variables were associated with nonadherence. Women who were nonadherent were more likely to be from a minority ethnic group, to have more negative medication beliefs and to have lower confidence in their ability to take tamoxifen. CONCLUSIONS: These demographic and clinical variables can be used to identify women at higher risk of nonadherence. The modifiable psychosocial variables can be used as the basis for psychological interventions to improve adherence in this population. Interventions should focus on both intentional and unintentional nonadherence. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

An illness-specific version of the Revised Illness Perception Questionnaire in patients with atrial fibrillation (AF IPQ-R): Unpacking beliefs about treatment control, personal control and symptom triggers.

OBJECTIVE: This study modified the Revised Illness Perception Questionnaire (IPQ-R) in patients with persistent atrial fibrillation (AF). DESIGN: Qualitative interviews and think-aloud techniques informed modification of the IPQ-R to be specific to AF patients. Confirmatory Factor Analysis (CFA) (n = 198) examined the validity of the modified IPQ-R (AF-IPQ-R). Exploratory factor analysis (EFA) examined the new AF-triggers scale. Construct validity examined associations between the AF-IPQ-R, quality of life (QoL) and beliefs about medicines. Test-retest and internal reliability were examined. RESULTS: Interviews indicated that patients viewed triggers of AF rather than initial causes of illness as more applicable. Patients believed specific behaviours such as rest could control AF. Treatment control beliefs related to pharmacological and procedural treatments. These data were used to modify the IPQ-R subscales and to develop a triggers of AF scale. CFA indicated good model fit. EFA of the triggers scale indicated three factors: emotional; health behaviours; and over-exertion triggers. Expected correlations were found between the AF-IPQ-R, QoL and treatment beliefs, evidencing good construct validity. CONCLUSION: The AF-IPQ-R showed sound psychometric properties. It provides more detailed specification than the IPQ-R of beliefs that may help to understand poor QoL in AF patients, and guidance for future interventions in this area.

'It's like a frog leaping about in your chest': Illness and treatment perceptions in persistent atrial fibrillation.

OBJECTIVES: Persistent atrial fibrillation (AF) is an abnormal heart rhythm associated with low quality of life (QoL) and significant health-related costs. The purpose of the study was to examine patients' illness and treatment beliefs and ways of coping with AF symptoms, to provide insight into promoting better QoL and treatment-specific management. DESIGN: Beliefs were explored across three procedural treatment groups using a qualitative cross-sectional design. METHODS: Thirty semi-structured interviews were carried out with patients undertaking cardioversion (n = 10), catheter ablation (n = 11) and atrioventricular node ablation (n = 9). Interviews were transcribed and analysed using inductive thematic analysis with elements of grounded theory. RESULTS: An overarching theme of a vicious cycle was evident, which related to perceived lack of knowledge and understanding of AF, attempts to control symptoms and negative emotional reactions to failed control attempts. This vicious cycle related to three subordinate themes: (1) unpredictability and uncertainty of AF and symptoms; (2) coping with symptoms through (a) avoidance (b) all-or-nothing- (c) slowing down behaviours; and (3) concerns and expectations about treatment. CONCLUSIONS: Patients outlined a need to gain control of unpredictable symptoms by monitoring and varying activity levels. These behaviours were often appraised as ineffective at controlling symptoms, leading to heightened uncertainty and increased activity avoidance. Treatment concerns escalated with increasing number and invasiveness of procedures. Improving AF patients' perceived understanding of their illness and treatment and promoting more effective symptom-management strategies may alleviate psychological distress and improve QoL. Themes elaborated on the common-sense model whereby patients' beliefs about illness and treatment interact with coping behaviours. Statement of contribution What is already known about this subject? Quality of life (QoL) is disproportionately low in people with persistent atrial fibrillation (psAF). The common-sense model suggests illness perceptions and coping predict QoL in chronic illnesses. No previous studies have examined the idiosyncratic beliefs and coping behaviours of psAF patients. What does this study add? A vicious cycle of perceived lack of understanding of AF, attempts to control AF and distress at failed attempts at control, was a key theme. PsAF patients reported continued avoidance/all-or-nothing behaviours despite symptomatic relief post-procedure, and disengagement from enjoyable activities. PsAF patients reported procedure-specific concerns/expectations, which could be targeted in future interventions aimed at reducing distress.

More than just side-effects: The role of clinical and psychosocial factors in non-adherence to tamoxifen.

OBJECTIVES: Tamoxifen non-adherence is apparent in up to half of breast cancer survivors and is associated with increased risk of recurrence and reduced quality of life. However, factors contributing to non-adherence in this population are currently poorly understood. This study explored the relationship between key components of the Common Sense Model of Illness Representations (CSM)/the Theory of Planned Behaviour (TPB) and intentional and unintentional non-adherence in a large sample of women prescribed tamoxifen following primary breast cancer. DESIGN: Cross-sectional questionnaire study (n = 777). METHODS: Women were eligible if they were over 18, had been diagnosed with primary breast cancer, and had been prescribed tamoxifen. Participants were recruited in clinic or online and completed questionnaires assessing illness perceptions, treatment beliefs, adherence, quality of life, social support, distress, and the key TPB components. Logistic regressions were conducted to test elements from each model and to identify correlates of intentional and unintentional non-adherence. RESULTS: Patients were classified as non-adherent based on Medication Adherence Rating Scale scores; 44% of the population were non-adherent; 41% reported unintentional non-adherence, and 9% reported intentional non-adherence. Study variables accounted for more variance in intentional (Nagelkerke R2  = 46%) than unintentional non-adherence (Nagelkerke R2  = 17%). Intentional non-adherence was best explained by a combination of TPB and CSM variables, but these variables did not contribute significantly to unintentional non-adherence. CONCLUSIONS: The TPB and the CSM provide a useful framework for understanding intentional tamoxifen non-adherence. Elements from both models should be considered when designing interventions to increase adherence rates. Statement of contribution What is already known about this subject? Non-adherence to tamoxifen is common and is associated with poor clinical outcomes. Few modifiable predictors of tamoxifen non-adherence have been identified. What does this study add? Unintentional non-adherence is reported much more frequently than intentional non-adherence. Elements from the CSM and TPB provide a useful framework for understanding non-adherence to tamoxifen. Unique correlates were found for intentional and unintentional non-adherence.

Understanding tamoxifen adherence in women with breast cancer: A qualitative study.

OBJECTIVE: Non-adherence to tamoxifen is common in breast cancer survivors and is associated with poor clinical outcomes. This study aimed to understand womens' experiences of taking tamoxifen and to identify factors which may be associated with non-adherence. DESIGN: A qualitative study using semi-structured interviews. METHODS: Thirty-two breast cancer survivors who had been prescribed tamoxifen took part in interviews conducted face to face or over the telephone. They were transcribed verbatim and analysed using inductive thematic analysis with elements of grounded theory. RESULTS: A key theme identified in the data was weighing up costs and benefits of treatment, which resulted in women falling into three groups; tamoxifen is keeping me alive, tamoxifen is not worth the reduced risk of recurrence, or conflicting beliefs about the harms and benefits of treatment. Additional themes were living with risk of recurrence and information & support. CONCLUSIONS: Women who believed that the necessity of tamoxifen outweighed its costs were more likely to be adherent, whereas women who thought that the benefits did not outweigh the side effects were more likely to have discontinued. A third more ambivalent group believed strongly in the importance of treatment, but were struggling with side effects and were often non-adherent. Patients sometimes felt unsupported and discussed a need for more comprehensive information. To increase adherence, future research needs to explore ways to increase beliefs around tamoxifen necessity and how to help women cope with side effects. Statement of contribution What is already known on this subject? Non-adherence to tamoxifen is associated with increased risk of recurrence and mortality. Up to 50% of patients are non-adherent to tamoxifen by the fifth year of treatment Few consistent predictors of tamoxifen non-adherence have been identified. What does this study add? Many women report not knowing how to manage their side effects. Non-adherence is related to how women weigh up their side effects against their medication beliefs. Interventions aiming to increase necessity beliefs and improve symptom management may be effective.

Barriers and facilitators of adjuvant hormone therapy adherence and persistence in women with breast cancer: a systematic review.

PURPOSE: Nonadherence to hormone therapy in breast cancer survivors is common and associated with increased risk of mortality. Consistent predictors of nonadherence and nonpersistence are yet to be identified, and little research has examined psychosocial factors that may be amenable to change through intervention. This review aimed to identify predictors of nonadherence and nonpersistence to hormone therapy in breast cancer survivors in order to inform development of an intervention to increase adherence rates. METHODS: Studies published up to April 2016 were identified through MEDLINE, Embase, Web of Science, PsycINFO, CINAHL and gray literature. Studies published in English measuring associations between adherence or persistence and any predictor variables were included. Eligible studies were assessed for methodological quality, data were extracted and a narrative synthesis was conducted. RESULTS: Sixty-one eligible articles were identified. Most studies focused on clinical and demographic factors with inconsistent results. Some evidence suggested that receiving specialist care and social support were related to increased persistence, younger age and increased number of hospitalizations were associated with nonadherence, and good patient-physician relationship and self-efficacy for taking medication were associated with better adherence. A small amount of evidence suggested that medication beliefs were associated with adherence, but more high-quality research is needed to confirm this. CONCLUSION: Some psychosocial variables were associated with better adherence and persistence, but the results are currently tentative. Future high-quality research should be carried out to identify psychosocial determinants of nonadherence or nonpersistence that are modifiable through intervention.