OBJECTIVE: In paediatric oncology, little is known about trajectories of illness perceptions and their longitudinal associations with health-related quality of life (HRQoL). Therefore, the aim of this study was to investigate changes in illness perceptions in children and parents over a one-year-period and to investigate predictive value of child\'s and parent\'s illness perceptions during acute treatment for child\'s HRQoL 1 year later.
METHODS: N = 65 child-parent-dyads participated in a longitudinal study (retention rate: 80.2%). Children were 4-18 years of age and underwent acute cancer treatment at baseline. Children and parents reported on their own illness perceptions (Illness-Perception-Questionnaire-Revised), as well as on the child\'s HRQoL (KINDL-R) at baseline and one-year-follow-up. Paired-samples t-tests were calculated to investigate changes over time. A hierarchical multiple regression analysis was performed to investigate predictive value of child\'s and parent\'s illness perceptions for child\'s HRQoL.
RESULTS: Child\'s HRQoL t(63) = -6.73, p < 0.001, their perceptions of coherence (i.e. understanding; t(54) = -2.36, p = 0.022) and consequences of their illness (t(54) = 2.86, p = 0.006), and parent\'s perception of cyclical trajectory (t(61) = 2.06, p = 0.044) improved from baseline to 1-year-follow-up. All other illness perceptions remained stable. Exploratory post-hoc analyses showed differences in the pattern of change in age-, gender-, and diagnosis-specific subgroups. After controlling for baseline levels of HRQoL, child\'s perceptions of symptoms and consequences were independent predictors of their HRQoL 1 year later (R2 = 0.396, F(2,52) = 10.782, p < 0.001), whereas no parent\'s illness perceptions added predictive value.
CONCLUSIONS: In paediatrics, child\'s and parent\'s illness perceptions should be assessed. Our findings highlight the importance of illness perceptions as potential modifiable variables in interventions to improve child\'s HRQoL.

BACKGROUND: Chronic pain is a recognised long-term consequence associated with breast cancer and its treatment; however, it is often underdiagnosed and undertreated. This study aims to explore the associations between illness representations, chronic cancer pain, and HRQoL in women who have survived breast cancer.
METHODS: A cross-sectional online survey design was used. Data from 182 women who participated in the survey were analysed.
RESULTS: Chronic cancer pain was reported by 66% of respondents. Using the BPI-SF (score 0-10), participants were categorised into one of four pain categories: no chronic pain (BPI score 0; 34.1%), mild pain (BPI score 1-3; 35.7%), moderate pain (BPI score 4-6; 25.3%), and severe pain (BPI score 7 + ; 4.9%). The main findings were that having a strong illness identity (IPQ-R subscale which assesses the number of symptoms an individual attributes to their illness) was found to be a significant predictor of pain severity (OR 1.21 (95% CI 1.07-1.37), p = 0.003). Furthermore, HRQoL was significantly associated and predictive of pain severity (OR 0.97 (95% CI 0.95-0.99), p < 0.001). An additional finding was that not being in paid work was strongly associated with being in a higher pain category (OR 5.92 (95% CI 1.84-19.05), p = 0.003).
CONCLUSIONS: The findings of this study highlight the high prevalence of chronic cancer pain experienced by this population. Results show that dimensions of illness representations are associated with chronic cancer pain experienced by breast cancer survivors. Furthermore, having a strong illness identity and HRQoL were found to be independent, significant predictors of pain severity.
CONCLUSIONS: These findings demonstrate that chronic pain is an unmet clinical need experienced by breast cancer survivors, which is associated with reduced overall HRQoL. Therefore, consideration is needed regarding the assessment and management of chronic pain experienced by this population.

Kidney stone disease (KSD) is a common, complex and painful urological condition, but how patients make sense of and respond to the challenges of KSD is poorly understood. Using the common-sense model of illness self-regulation (CSM-SR), we aimed to explore the illness experiences of individuals with KSD.
A qualitative design using individual semi-structured interviews.
Thirty-three patients with KSD attending outpatient urology services participated in interviews informed by the CSM-SR. Data were analysed using reflexive thematic analysis. Themes were mapped onto the domains of the CSM-SR.
Five main themes were generated, broadly echoing domains within the CSM-SR: (1) making sense of KSD, (2) normality paused, (3) the psychological burden of KSD, (4) the tensions of managing KSD, and (5) improving understanding of KSD. Additionally, findings suggested that partners\' perceptions of KSD were an additional contextual factor that informed patients\' own perceptions and management of KSD. Participants appraised initial KSD symptoms as indicative of a serious health threat. Diagnosis brought some relief, however, KSD wielded multi-dimensional impacts on patients\' perceptions, self-management and well-being. Anxiety, including fear of KSD recurrence, and low mood were common psychological burdens across narratives.
The majority of the themes identified were commensurate with an extended CSM-SR. This model has utility in informing how patients perceive and manage KSD. Examining patients\' KSD representations and routinely assessing for psychological distress may be of benefit to improve health outcomes for this patient group.

Benefits from low back pain (LBP) treatments seem to be related to patients changing their pain cognitions and developing an increased sense of control. Still, little is known about how these changes occur. The objective of this study was to gain insights into possible shifts in the understanding of LBP and the sense of being able to manage pain among patients participating in a LBP self-management intervention.
Using a qualitative study and a content analytic framework, we investigated the experiences of patients with LBP who participated in \'GLA:D® Back\', a group-based structured patient education and exercise program. Data were generated through qualitative semi-structured interviews conducted between January 2019 and October 2019. Interviews focused on experiences with pain and were analysed using a thematic analytical approach. The Common Sense Model and self-efficacy theory formed the theoretical framework for the interpretations. Participants were sampled to represent people who were either dissatisfied or satisfied with their participation in GLA:D® Back. Fifteen participants aged 26-62, eight women and seven men, were interviewed from February to April 2020.
Four main themes, corresponding to the characterisation of four patient groups, were identified: \'Feeling miscast, \'Maintaining reservations\', \'Struggling with habits\' and \'Handling it\'. The participants within each group differed in how they understood, managed, and communicated about their LBP. Some retained the perception of LBP as a threatening disease, some expressed a changed understanding that did not translate into new behaviors, while others had changed their understanding of pain and their reaction to pain.
The same intervention was experienced very differently by different people dependent on how messages and communication resonated with the individual patient\'s experiences and prior understanding of LBP. Awareness of the ways that individuals\' understanding of LBP interact with behaviour and physical activities appear central for providing adaptive professional support and meeting the needs of individual patients.

Retinoblastoma is the most common primary intraocular tumor of childhood with >95% survival rates in the US. Traditional therapy for retinoblastoma often included enucleation (removal of the eye). While much is known about the visual, physical, and cognitive ramifications of enucleation, data are lacking about survivors\' perception of how this treatment impacts overall quality of life.
Qualitative analysis of an open-ended response describing how much the removal of an eye had affected retinoblastoma survivors\' lives and in what ways in free text, narrative form.
Four hundred and four retinoblastoma survivors who had undergone enucleation (bilateral disease = 214; 52% female; mean age = 44, SD = 11) completed the survey. Survivors reported physical problems (n = 205, 50.7%), intrapersonal problems (n = 77, 19.1%), social and relational problems (n = 98, 24.3%), and affective problems (n = 34, 8.4%) at a mean of 42 years after diagnosis. Three key themes emerged from survivors\' responses; specifically, they (1) continue to report physical and intrapersonal struggles with appearance and related self-consciousness due to appearance; (2) have multiple social and relational problems, with teasing and bullying being prominent problems; and (3) reported utilization of active coping strategies, including developing more acceptance and learning compensatory skills around activities of daily living.
This study suggests that adult retinoblastoma survivors treated with enucleation continue to struggle with a unique set of psychosocial problems. Future interventions can be designed to teach survivors more active coping skills (e.g., for appearance-related issues, vision-related issues, and teasing/bullying) to optimize survivors\' long-term quality of life.

Familial Hypercholesterolemia (FH) is a genetic condition that predisposes patients to substantially increased risk of early-onset atherosclerotic cardiovascular disease. FH risks can be minimized through regular participation in three self-management. BEHAVIORS: physical activity, healthy eating, and taking cholesterol lowering medication.
The present study tested the effectiveness of an integrated social cognition model in predicting intention to participate in the self-management behaviors in FH patients from seven countries.
Consecutive patients in FH clinics from Australia, Hong Kong, Brazil, Malaysia, Taiwan, China, and UK (total N = 726) completed measures of social cognitive beliefs about illness from the common sense model of self-regulation, beliefs about behaviors from the theory of planned behavior, and past behavior for the three self-management behaviors.
Structural equation models indicated that beliefs about behaviors from the theory of planned behavior, namely, attitudes, subjective norms, and perceived behavioral control, were consistent predictors of intention across samples and behaviors. By comparison, effects of beliefs about illness from the common sense model were smaller and trivial in size. Beliefs partially mediated past behavior effects on intention, although indirect effects of past behavior on intention were larger for physical activity relative to taking medication and healthy eating. Model constructs did not fully account for past behavior effects on intentions. Variability in the strength of the beliefs about behaviors was observed across samples and behaviors.
Current findings outline the importance of beliefs about behaviors as predictors of FH self-management behaviors. Variability in the relative contribution of the beliefs across samples and behaviors highlights the imperative of identifying sample- and behavior-specific correlates of FH self-management behaviors.

OBJECTIVE: Head and neck cancer (HNC) constitutes a substantial portion of the cancer burden worldwide, with over 550,000 new cases and over 300,000 deaths annually, with disproportionately high mortality rates in the developing countries. The large majority of HNCs are caused by tobacco use, and synergistic effects of tobacco and alcohol use. Using the Common-Sense Model (CSM) as a framework, this qualitative study sought to understand South Asian HNC survivors\' cognitive and emotional representations of their cancer; and to assess if these representations differ by smokeless tobacco (SLT) vs. smoked tobacco use.
METHODS: In-depth semi-structured interviews, conducted with South Asian HNC survivors (N = 15, 80% participants were immigrants, while 20% came to the United States for treatment) to identify key themes and issues related to HNC experience and SLT vs. smoked tobacco use.
RESULTS: The results of the study provide a deeper understanding of South Asian HNC survivor experiences with receiving a HNC diagnosis, delays in seeking treatment and related medical care, disagreement regarding smoked tobacco/SLT history as potential causes of cancer, strategies to cure the cancer or prevent recurrence, enduring physical and psycho-social consequences of treatment, and emotional impact of the cancer experience. Three key implications emerged: (a) the utility of narratives as a method of eliciting HNC survivor experience to understand patient experiences and concerns; (b) the potential for public health practitioners to harness patients\' voices and the power of storytelling for developing campaigns about public awareness of SLT use, providing information and support to SLT users, and encouraging SLT quitting resources; and (c) the importance of providing clear, personalized and culturally sensitive education regarding the risks of SLT use.
CONCLUSIONS: This study underscores the significance of offering tailored tobacco cessation services to South Asian HNC survivors, and to help inform supportive models of care for others.

OBJECTIVE: The aim of this study was to describe people\'s experiences of suffering a second myocardial infarction.
METHODS: A descriptive qualitative design. Interviews were conducted with eight persons afflicted by two myocardial infarctions. Data were analysed with qualitative content analysis.
RESULTS: The analysis resulted in one theme and four categories. The theme was \'Realising the seriousness\' and the categories were: 1) Knowledge from previous experience; 2) A wake-up call for lifestyle changes; 3) The future becomes unpredictable; 4) Trying to find balance in life. The participant\'s previous experience contributed to a better understanding of the symptoms of myocardial infarction and how to act when suffering a second myocardial infarction. After their second myocardial infarction, the participants became really aware of the need to implement a healthier lifestyle, as doing so might avoid a third myocardial infarction. The risk of suffering or even dying due to yet another myocardial infarction felt more tangible after their second one.
CONCLUSIONS: A second myocardial infarction is a different event in comparison to the first one, which makes afflicted people realise the seriousness and importance of making life style changes. They are more affected both physically and psychologically.

OBJECTIVE: This study aimed to describe the status of patient delay and examine related factors affecting patient delay in individuals with haemorrhoids in mainland China, based on theory of planned behaviour and common sense model.
BACKGROUND: Studies on patient delay have mainly focused on cancer, tuberculosis and myocardial infarction, but studies on patient delay in individuals with haemorrhoids have yet to be conducted. Compared with other diseases, haemorrhoids are initially considered benign. However, if patients with haemorrhoids seek delayed medical assistance, they pay a large cost for worse symptoms because they fail to seek timely treatments compared with those who receive appropriate treatments at early stages.
METHODS: A cross-sectional study design was used.
METHODS: The current study was performed on 306 patients with haemorrhoids from June - October 2017. Data were collected via a self-administered pencil-and-paper survey that consisted of a multi-item questionnaire. Stepwise logistic regression analysis was conducted to explore the factors of patient delay.
RESULTS: Middle-aged participants were more than twice more likely to report patient delay than participants in other age groups. A high level of perceived self-efficacy, a high level of illness perceptions and perceived social impact were associated with prolonged delay.
CONCLUSIONS: This study showed that patient delay is common among patients with haemorrhoids in China. The influencing factors of patient delay were middle-aged, illness perceptions, perceived self-efficacy, and perceived social impact.
目的: 本研究旨在以计划行为理论和常识模型为基础,描述中国大陆痔疮患者延迟就医的现状,并探讨影响患者延迟就医的相关因素。 背景: 对患者延迟的研究主要集中在癌症、结核病和心肌梗死,但对痔疮患者延迟的研究尚未开展。与其他疾病相比,痔疮最初被认为是良性的。然而,如果痔疮患者寻求延迟的医疗援助,他们将为更严重的症状付出巨大的代价,因为与那些在早期接受适当治疗的患者相比,他们未能及时寻求治疗。 设计: 采用横断面研究设计。 方法: 本研究于2017年6月至10月对306例痔疮患者进行了研究。数据是通过一个由多项问卷组成的自我管理的铅笔和纸张调查收集的。采用逐步逻辑回归分析探讨患者延迟就诊的因素。 结果: 与其他年龄段的参与者相比,中年参与者报告病人延误的可能性要高出一倍以上。自我效能感高、疾病认知高、社会影响认知高与长时间延迟相关。 结论: 本研究表明,在我国痔疮患者中,患者延迟就诊是常见的。患者延迟就诊的影响因素为中年、疾病认知、自我效能感和社会影响。.

Illness representations, known as patients\' beliefs and expectations about an illness, may be influenced by cultural beliefs and personal experiences. This study explored African Americans\' perceptions of the sociocultural factors that influence their representations of diabetes.
Six semi-structured focus groups.
Private space at a convenient site.
Forty African Americans, aged 45-60 years with type 2 diabetes for at least one year prior.
Participants perceived that there was a race-mediated effect of how they developed diabetes because of poverty due to past slavery, racial discrimination by health care providers, and the stigma associated with diabetes within the African American community. Participants perceived that poverty influenced African Americans\' unhealthy eating habits, which led to diabetes diagnosis among their ancestors and their development of the disease since it was hereditary. Participants also perceived that there was provider ill intention, ie, providers were purposefully making people sick, and their lack of education on diabetes from providers was done on purpose, as information on diabetes was withheld and not shared due to racial discrimination. Perceived stigma by the community led to African Americans\' avoidance and denial of the disease, and subsequently the development of diabetes.
To enhance disease management for African Americans with diabetes, it is important to focus on the sociocultural context of how African Americans view their world that may be influenced by their knowledge of negative historical circumstances and their current provider relationship, which, in turn, may be reflected in their perceptions of diabetes.