Trajectories of illness perceptions in paediatric cancer patients and their parents and associations with health-related quality of life: Results of a prospective-longitudinal study.

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. CONCLUSION: 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.

A mixed methods systematic literature review of barriers and facilitators to help-seeking among women with stigmatised pelvic health symptoms.

BACKGROUND: Women's pelvic health is a globally important subject, included in international and United Kingdom health policies, emphasising the importance of improving information and access to pelvic health services. Consequences of pelvic symptoms are intimate, personal, and varied, often causing embarrassment and shame, affecting women's quality of life and wellbeing. AIM: To understand the experience of seeking healthcare for stigmatised pelvic health symptoms by synthesising all types of published primary research and mapping the results to behavioural theory, to identify potential targets for intervention. METHODS: Systematic search of MEDLINE, CINAHL, PsycINFO, SocINDEX, PubMED databases, CDSR and CENTRAL registers, from inception to May 2023 for all types of research capturing women's views and experiences of seeking help with stigmatised urogenital and bowel symptoms. Studies only reporting prevalence, predictors of help-seeking, non-health related help-seeking, or written in languages other than English, German, French, Spanish and Swedish were excluded. Reference checking and forward citation searching for all included studies was performed. A results-based synthesis approach was used to integrate quantitative and qualitative data. Themes were mapped to the Common-Sense model and Candidacy framework. The Mixed Methods Appraisal Tool was used for critical appraisal. Grading of Recommendations Assessment, Development and Evaluation - Confidence in Evidence from Reviews of Qualitative research for assessing certainty of review findings. RESULTS: 86 studies representing over 20,000 women from 24 high income countries were included. Confidence was high that barriers to help-seeking were similar across all study types and pelvic symptoms: stigma, lack of knowledge, women's perception that clinicians dismissed their symptoms, and associated normalising and deprioritising of low bother symptoms. Supportive clinicians and increased knowledge were key facilitators. CONCLUSIONS: Using the Common-Sense Model to explore women's help-seeking behaviour with stigmatised pelvic symptoms reveals problems with cognitive representation of symptom identity, emotional representations of embarrassment and shame, and a subjective norm that women believe their symptoms will be trivialised by clinicians. Together these barriers frustrate women's identification of their candidacy for healthcare. Addressing these issues through behavioural change interventions for women and clinicians, will help to achieve universal access to pelvic healthcare services (United Nations Sustainable Development Goal 3.7). SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42021256956.

The puppet interview to measure illness perceptions in paediatric oncology: development and psychometric properties in acute treatment and follow-up care.

BACKGROUND: Illness perceptions comprise assumptions about symptoms, timeline, consequences, controllability, and emotional responses to an illness. Recent evidence shows that illness perceptions are associated with coping and well-being. So far, assessment in paediatric care was based on parental report only, since no instrument for the direct assessment of young children was available. We aim to describe the development (incl. indication and contraindication) of an innovative puppet interview to assess illness perceptions in children with cancer from the age of four years. Moreover, we investigate longitudinal trajectories and examine psychometric properties. METHODS: The puppet interview was developed based on the Illness-Perception-Questionnaire-Revised and the Berkeley-Puppet-Interview. Longitudinal trajectories and psychometric properties were examined in a sample of patient-parent dyads (N = 75) in a prospective longitudinal study in acute treatment with a 1-year follow-up (study 1: nT1 = 41, nT2 = 27) and in a cross-sectional study in follow-up care (study 2, n = 34). RESULTS: The puppet interview is comprehensible and well-received by children in acute treatment and follow-up care. There were significant differences in perceptions of a chronic timeline (U = 301.00, p = .008), consequences (U = 251.00, p = .008), and emotional representations (U = 244.50, p = .020) between children in acute treatment and children in follow-up care. Over the course of one year, children in acute treatment perceived more symptoms as part of their illness (MT1 = 3.6, SDT1 = 2.9, MT2 = 4.5, SDT2 = 3.1, n = 27, Z = -2.603, p = .009). We found expected intercorrelations between illness perception dimensions, e.g. between perception of consequences and emotional representations (rτ = .27, p = .033), and between perception of a chronic timeline and consequences (rτ = .38, p = .001). Moreover, we found confirming results regarding construct validity, as child's perceptions of symptoms correlated with their self-rated HRQoL (rτ = -.32, padj. = .014). Also parent-rated subscale on illness-specific aspects of child's HRQoL correlated with child's perception of symptoms (rτ = -.26, padj. = .016), cyclicity (rτ = -.28, padj. = .016), and consequences (rτ = -.34, padj. = .014). Acceptable internal consistency was shown for the dimensions timeline-acute/chronic and personal control. CONCLUSIONS: Parental report can now be complemented by a self-report of illness perceptions in children aged four years and older. This will allow for the further adaptation of medical and psychosocial care during and after acute cancer treatment. TRIAL REGISTRATION: The study has been pre-registered at the German Clinical Trials Register (registered 30/06/2020; DRK-S00022034) and at the Open Science Foundation ( https://osf.io/7xr6z ).

Illness perceptions in cochlear implant users - a longitudinal study.

PURPOSE: 'Illness perceptions' refers to the thoughts and ideas a person has about an illness. According to Leventhal's Self-Regulatory Model (SRM), changing the threatening illness perceptions of cochlear implant (CI) recipients can be a further step in optimizing hearing outcomes with the CI. The aims of the present study were to assess users' illness perceptions and to determine whether perceptions change during six months of CI rehabilitation. METHODS: One hundred and thirty-eight participants completed the Brief Illness Perception Questionnaire (Brief IPQ), assessing their illness perceptions on nine scales. Data were collected at a German CI center at first CI fitting and six-month follow-up. After first fitting, participants underwent intensive rehabilitation including auditory training, medical, audiological and psychological treatments. RESULTS: At both assessments, participants tended to view their hearing impairment as a severe threat. On the Brief IPQ, the 'consequences' assessment improved during CI rehabilitation, which can be explained by the CI-induced hearing improvement. However, 'understanding' and 'identity' assessments worsened. This could be because CI recipients only come to realize the full complexity of their hearing impairment during rehabilitation. The other scales and the total score remained unaffected. CONCLUSIONS: Current practice in CI rehabilitation seems to be insufficient to improve threatening illness perceptions (except for perceived consequences). This may be because standard information often fails to reach the patients. The development and empirical validation of an intervention program to address individual illness perceptions in CI recipients could be helpful in this context. Further research will be needed to confirm the results.

Parents' illness representations of their child with anorexia nervosa: A systematic review of qualitative studies using the common-sense model.

OBJECTIVE: Research indicates that parents experience distress while caring for a child with anorexia nervosa. Applying the Common Sense Model of Self-Regulation (CSM), a framework to describe responses to illness may help to understand the antecedents of parental distress, which could inform how to support parents in treatment. The aim of this systematic review was to synthesize outcomes from qualitative research in relation to parents' experiences of caring for a child with anorexia nervosa using the CSM. METHOD: Systematic search of four electronic databases (psychINFO, MEDLINE, EMBASE, ProQuest Dissertation, and Theses Database) alongside a two-way screening process was used to identify eligible studies. Qualitative themes were synthesized using a "best fit" framework analysis and reported according to CSM dimensions of cognitive and emotional illness representations. RESULTS: A total of 32 studies published between 1970 and 2023 were eligible for inclusion for review. Parents perceived their child's anorexia nervosa as a major health threat observable by illness representations that anorexia nervosa was uncontrollable, incomprehensible, chronic, and associated with negative consequences. The themes also suggested parents take responsibility for causing anorexia nervosa. These illness representations were linked with emotional representations of fear, anxiety, shame, guilt, loneliness, and depression. CONCLUSIONS: The findings provide evidence of the utility of using the CSM to understand the antecedents of parents' distress and negative impacts of caring for a child with anorexia nervosa. Recommendations for future research and clinical practice are discussed emphasizing the need to understand parents' perceptions of their child's illness to putatively maximize treatment benefits for families. PUBLIC SIGNIFICANCE: This review emphasizes the salience of understanding parents distress while caring for a child with anorexia nervosa. The findings present opportunities to best support parents in treatment, with a focus on addressing their cognitive and emotional representations of their child's illness. A multicomponent treatment regimen may be required to support parents if they present with illness representations that negatively affect their well-being and ability to cope with distress.

OBJETIVO: Las investigaciones indican que los padres experimentan angustia mientras cuidan a un hij@ que padece anorexia nerviosa. La aplicación del modelo de autorregulación del sentido común (Common Sense Model of Self-Regulation, CSM), un marco para describir las respuestas a la enfermedad, puede ayudar a comprender los antecedentes de la angustia de los padres, lo que podría informarnos sobre cómo apoyar a los padres en el tratamiento. El objetivo de esta revisión sistemática fue sintetizar los resultados de la investigación cualitativa en relación con las experiencias de los padres en el cuidado de un hij@ que padece anorexia nerviosa utilizando el CSM. MÉTODO: Se realizó una búsqueda sistemática en cuatro bases de datos electrónicas (psychINFO, MEDLINE, EMBASE, ProQuest Dissertation and Theses Database) junto con un proceso de selección bidireccional para identificar los estudios elegibles. Los temas cualitativos se sintetizaron mediante un análisis del marco de "mejor ajuste" y se presentaron de acuerdo con las dimensiones del MCS de las representaciones cognitivas y emocionales de la enfermedad. RESULTADOS: 32 estudios publicados entre 1970 y 2023 fueron elegibles para su inclusión en la revisión. Los padres percibían la anorexia nerviosa de sus hij@s como una amenaza importante para la salud observable por las representaciones de enfermedad de que la anorexia nerviosa era incontrolable, incomprensible, crónica y asociada a consecuencias negativas. Los temas también sugerían que los padres asumían la responsabilidad de causar la anorexia nerviosa. Estas representaciones de la enfermedad estaban vinculadas a representaciones emocionales de miedo, ansiedad, vergüenza, culpa, soledad y depresión. CONCLUSIONES: Los hallazgos proporcionan evidencia de la utilidad de utilizar el CSM para comprender los antecedentes de la angustia de los padres y los impactos negativos de cuidar a un hij@ que padece anorexia nerviosa. Se discuten recomendaciones para futuras investigaciones y prácticas clínicas, enfatizando la necesidad de comprender las percepciones de los padres sobre la enfermedad de sus hij@s para maximizar los beneficios del tratamiento para las familias.

Listening to parents caring for individuals with eating disorders through the lens of the common-sense model of illness perception.

Marchetti and Sawrikar (International Journal of Eating Disorders, 2023) used the framework of the Common-Sense Model of the Self-Regulation to explore the perceptions and experiences of parents caring for individuals with anorexia nervosa (AN) from a systematic review of the literature. The studies they reviewed delved into the subjective experiences of parents and considered the influence of emotional and cognitive representations of AN which were predominantly negative. Parents play a key role in all stages of the management of an eating disorder and so our commentary sets the findings into the wider context of eating disorder services. It is important that we continue to forge a collaborative approach with parents that addresses their needs and insights to improve our knowledge about, and services for people with eating disorders.

The integrated common-sense model of illness self-regulation: predicting healthy eating, exercise behaviors, and health among individuals at risk of metabolic syndrome.

BACKGROUND: Little is known about the potential mechanisms of healthy eating and exercise change, and design interventions which aim to promote healthy eating and exercise change among individuals at risk of metabolic syndrome. This study aimed to identify key determinants of healthy eating, exercise behaviors, and health among individuals at risk of metabolic syndrome using the integrated common-sense model of illness self-regulation. METHOD: A cross-sectional study with a multi-wave data collection strategy. A total of 275 participants at risk of metabolic syndrome based on the clinical prediction model were included in the final analysis. Path analysis was employed to explore the pattern of relationships between key variables using AMOS. RESULTS: The mediation analysis suggested that personal and treatment control, and coherence can positively affect self-reported health via intentions and health behaviors (exercise and healthy eating). Additionally, relationships between self-efficacy (exercise and healthy eating) and health outcomes can be mediated by health behaviors, and both intentions and health behaviors. CONCLUSIONS: This current research used the integrated common-sense model of illness self-regulation to predict healthy eating, exercise behaviors, and self-reported health among individuals at risk of metabolic syndrome. The results suggested that self-efficacy, intention, consequences, personal control, treatment control, and coherence were the key determinants of behavior and health, which can help design interventions to encourage healthy eating and exercise changes among individuals with a high risk of MetS.

Common Sense Models of Obesity: a Qualitative Investigation of Illness Representations.

BACKGROUND: The Common Sense Model provides a framework to understand health beliefs and behaviors. It includes illness representations comprised of five domains (identity, cause, consequences, timeline, and control/cure). While widely used, it is rarely applied to obesity, yet could explain self-management decisions and inform treatments. This study answered the question, what are patients' illness representations of obesity?; and examined the Common Sense Model's utility in the context of obesity. METHODS: Twenty-four participants with obesity completed semi-structured phone interviews (12 women, 12 men). Directed content analysis of transcripts/notes was used to understand obesity illness representations across the five illness domains. Potential differences by gender and race/ethnicity were assessed. RESULTS: Participants did not use clinical terms to discuss weight. Participants' experiences across domains were interconnected. Most described interacting life systems as causing weight problems and used negative consequences of obesity to identify it as a health threat. The control/cure of obesity was discussed within every domain. Participants focused on health and appearance consequences (the former most salient to older, the latter most salient to younger adults). Weight-related timelines were generally chronic. Women more often described negative illness representations and episodic causes (e.g., pregnancy). No patterns were identified by race/ethnicity. CONCLUSIONS: The Common Sense Model is useful in the context of obesity. Obesity illness representations highlighted complex causes and consequences of obesity and its management. To improve weight-related care, researchers and clinicians should focus on these beliefs in relation to preferred labels for obesity, obesity's most salient consequences, and ways of monitoring change.

Impact of chronic kidney disease on illness perceptions, coping, self-efficacy, psychological distress and quality of life.

Chronic kidney disease (CKD) negatively impacts psychological well-being and quality of life (QoL). Underpinned by the Common Sense Model (CSM), this study evaluated the potential mediating role of self-efficacy, coping styles and psychological distress on the relationship between illness perceptions and QoL in patients living with CKD. Participants were 147 people with stage 3-5 kidney disease. Measures included eGFR, illness perceptions, coping styles, psychological distress, self-efficacy and QoL. Correlational analyses were performed, followed by regression modelling. Poorer QoL was associated with greater distress, engagement in maladaptive coping, poorer illness perceptions and lower self-efficacy. Regression analysis revealed that illness perceptions predicted QoL, with psychological distress acting as a mediator. The proportion of variance explained was 63.8%. These findings suggest that psychological interventions are likely to enhance QoL in CKD, if they target the mediating psychological processes associated with illness perceptions and psychological distress.

Effect of illness perception on predicting breast cancer-related lymphedema risk management behaviours among breast cancer patients: A comparison between dimensions and profiles.

AIM: This study aimed to explore the utility of latent profile analysis of illness perception, in comparison to treating illness perception as several dimensions, to predict breast cancer-related lymphedema risk management behaviours among Chinese breast cancer patients. METHODS: This is a 3-month longitudinal study. From August 2019 to January 2021, patients who recently underwent breast cancer surgery including axillary lymphadenectomy were recruited. Illness perception and risk management behaviours were measured by breast cancer-related lymphedema specific questionnaires before discharge following surgery (n = 268) and at 3 months postsurgery (n = 213), respectively. RESULTS: Treating illness perception as several dimensions, 'illness coherence' and 'timeline (cyclical)' dimensions were found to be significantly associated with breast cancer-related lymphedema risk management behaviours. Using the latent profile analysis, two illness perception profiles were identified and significant differences were revealed in breast cancer-related lymphedema risk management behaviours between them. Overall, illness perception profiles explained smaller amounts of variability in breast cancer-related lymphedema risk management behaviours than illness perception dimensions. CONCLUSION: Future studies could combine these two different perspectives of illness perception regarding breast cancer-related lymphedema into the design of interventions to improve breast cancer-related lymphedema risk management behaviours.

The Role of Pain Acceptance, Pain Catastrophizing, and Coping Strategies: A Validation of the Common Sense Model in Females Living with Fibromyalgia.

This study aimed to examine the extent to which illness beliefs, coping styles, pain acceptance, pain catastrophizing, and psychological distress mediate the relationship between fibromyalgia symptoms and quality of life (QoL) in a female cohort diagnosed with Fibromyalgia (n = 151). Measures used included the Revised Fibromyalgia Impact Questionnaire, Carver Brief COPE scale, Chronic Pain Acceptance Questionnaire Revised, Pain Catastrophizing Scale, Brief Illness Perceptions Questionnaire, Depression and Anxiety Stress Scales, and European Health Interview Survey Quality of Life 8-item Index. Using structural equation modelling, the final model indicated that fibromyalgia symptom severity had a significant direct influence on illness perceptions and psychological distress. In turn, illness perceptions had a significant direct influence on maladaptive coping, pain catastrophizing, pain acceptance, and QoL. Pain catastrophizing and maladaptive coping influenced psychological distress, and in turn distress impacted QoL. Acceptance of pain was found to be influenced by maladaptive coping and in turn acceptance of pain influenced QoL.

Exploring the Impact of Covid-19-Related Perceptions on Psychological Distress and Quality of Life in an International Gastrointestinal Cohort Over Time Guided by the Common Sense Model.

The aim of this longitudinal study was to examine changes in COVID-19 and illness-related perceptions, gastrointestinal symptoms, coping, catastrophising, psychological distress, and QoL during the COVID-19 pandemic. A total of 831 adults with a gastrointestinal condition completed an online questionnaire at baseline (May-October 2020). Of those, 270 (32.5%) participants (85.2% female, mean age = 47.3 years) provided follow-up data (March-May 2021). Repeated-measures multiple analysis of variance and a cross-lagged panel model were used to test the study hypotheses. Gastrointestinal symptoms and COVID-19 perceptions at follow-up were strongly predicted by their baseline values, while illness perceptions were predicted by baseline gastrointestinal symptoms. Cross-lagged relationships indicated a reciprocal relationship between gastrointestinal symptoms and psychological distress. Moreover, gastrointestinal symptoms had substantial predictive utility, strongly predicting future gastrointestinal symptoms, and to a lesser extent, more negative illness perceptions, greater psychological distress, and greater use of adaptive coping strategies across time.

Predicting different dimensions of schizophrenia-related stigma in Israel: Exploring the applicability of the common sense model of illness.

The common sense model of illness is a promising conceptual framework that can promote our understanding of the predictors of schizophrenia-related public stigma. Because stigma is a multidimensional phenomenon, studies on schizophrenia-related stigma need to account for the origins of the various aspects of this phenomenon. This study explored which common sense model of illness components (cognitive and emotional) predicted three distinct indicators of stigma (stereotypes and discrimination on the individual and structural levels). A nonprobability sample of 149 students from one of the largest universities in Israel was drawn. Data were collected via a self-reported questionnaire. We found that five of the nine common sense model of illness variables predicted schizophrenia stereotypes, whereas very few predicted discrimination. Additionally, we found that greater belief in the effectiveness of schizophrenia treatment was associated with lower stereotypes and social-level discrimination. The less the perceived consequences of schizophrenia (the extent to which the illness is perceived to affect one's life), the lower the stereotypes and discrimination (individual and social). The perceived cause of schizophrenia and attribution of personal control over the illness did not predict any stigma dimension. The findings suggest that the common sense model of illness is more suitable for predicting stereotypes than discrimination. More research is needed to understand the unique drivers of different dimensions of stigma. The findings also imply the need to design separate programs to address different aspects of schizophrenia-related stigma.

Understanding care needs of cancer patients with depressive symptoms: The importance of patients' recognition of depressive symptoms.

OBJECTIVE: The majority of cancer patients with depressive symptoms does not perceive a need for psychological care. Reasons for this are still unclear. We examined the mediating role of cancer patients' perceptions of depressive symptoms in the relationship between depressive symptoms and perceived need for psychological care. METHODS: For this cross-sectional study, we recruited 127 Dutch cancer patients with moderate to severe levels of depressive symptoms (Patient Health Questionnaire [PHQ]-9≥10) who did not receive professional psychological care. Depressive symptoms were measured with the PHQ-9 questionnaire, by using three different depression score operationalizations. We used mediation analyses to test the mediating role of patients' illness perceptions (measured with subscales of the Brief Illness Perception Questionnaire) in the relation between depressive symptoms and need for care. RESULTS: Whilst results did not show significant direct associations between depressive symptoms and perceived need for psychological care, we found positive indirect effects of severity (B = 0.07, SE = 0.04, p < 0.02), meeting the DSM-5 diagnosis (B = 0.45, SE = 0.26, p < 0.02) and having relatively more affective symptoms (B = 2.37, SE = 1.10, p < 0.02) on need for care through the identity perception. CONCLUSIONS: Including assessments of patients' recognition of depressive symptoms and their perceptions of depression treatment efficacy might improve depression screening in cancer patients by more accurately identifying those with a need for psychological care. Moreover, improving patients' knowledge and recognition of symptoms as being depressive symptoms might be a possible target point in increasing care needs and hereby optimizing the uptake of psychological care in cancer patients with depressive symptoms.

Illness perceptions in patients and parents in paediatric oncology during acute treatment and follow-up care.

OBJECTIVE: Recent evidence suggests that illness perceptions in paediatric patients and their parents may differ, with parents holding more negative views compared to their children. Little is known about illness perceptions of very young patients and their parents. This study investigates illness perceptions in paediatric cancer patients aged 4-18 years and their parents in acute treatment or follow-up care, distinguishing patients by age (4-11, 12-18) and stage of medical treatment. METHODS: N = 45 patient-parent dyads in acute treatment and n = 95 dyads in follow-up care were examined. Parents and older children aged 12-18 years completed the Illness Perception Questionnaire-Revised (IPQ-R) and younger children aged 4-11 years were examined using an age-adapted hand puppet interview containing the IPQ-R questions. Difference scores of illness perceptions (symptoms, timeline-acute/chronic, timeline-cyclical, personal control, illness coherence, consequences, emotional representations) between children and parents were tested for significance using Wilcoxon signed-rank tests. RESULTS: Overall, parents perceived more symptoms associated with their child's illness/treatment than the children themselves. In acute treatment, younger children indicated more negative and older children more positive views regarding chronicity than parents. Younger children held less negative views on consequences, and all children reported less negative emotional representations than parents. In follow-up care, all children held less negative views on consequences and emotional representations. Older children reported less negative views on chronicity, cyclicity and illness coherence. CONCLUSION: Differences in illness perceptions of paediatric patients and their parents should be considered during and after treatment/medication and psychosocial care to support illness coping in person- and family-centred interventions.

Illness representations, coping and anxiety among men with localized prostate cancer over an 18-months period: A parallel vs. level-contrast mediation approach.

OBJECTIVE: Men diagnosed with localized prostate cancer (lPCa) are confronted with the decision for a treatment strategy, potentially experiencing treatment side effects and psychological distress. The Common Sense Model proposes that coping with such challenges is related to illness representations: Beliefs regarding consequences, coherence, timeline, and controllability of the illness. We analyzed the interplay of illness representations, coping and anxiety over an 18-month period among men with lPCa undergoing different treatment options (Active Surveillance, curative treatment). METHODS: In this longitudinal study, 183 men (age M = 66.83) answered a questionnaire before starting treatment, and 6, 12, and 18 months later. We analyzed time trajectories with growth curve modeling and conducted mediation analyses to evaluate the influence of coping on the association of illness representations and anxiety. Using a novel methodological approach, we compared a classic parallel mediation model with a level-contrast approach for the correlated mediators problem- and emotion-focused coping. RESULTS: Independent of treatment (b = 1.31, p = 0.200) men reported an elevated level of anxiety after diagnosis which declined considerably within the following 6 months (b = -1.87, p = 0.009). The perceived seriousness of consequences was significantly associated with greater anxiety, at baseline (ß = 0.471) and over time (all ß ≥ 0.204). This association was mediated by coping: Using more emotion-than problem-focused coping was associated with higher anxiety. CONCLUSIONS: Receiving a lPCa diagnosis is associated with a phase of increased anxiety. In order to reduce anxiety, information provision should be accompanied by developing concrete action plans to enable problem-focused coping strategies.

Vision-related quality of life in patients with glaucoma: the role of illness perceptions.

PURPOSE: To explore the predictive effects of illness perceptions on vision-related quality of life (VRQoL) in Chinese glaucoma patients. METHODS: In this cross-sectional study, 97 patients with glaucoma completed the brief illness perception questionnaire (BIPQ), the glaucoma quality of life-15 (GQL-15) questionnaire, and a questionnaire regarding sociodemographic and clinical information. A correlation analysis and hierarchical linear regression analysis were performed. RESULTS: The BIPQ total score was positively correlated with the total score of the GQL-15 questionnaire and the scores of its four dimensions. Chronic comorbidities, the type of glaucoma, the best-corrected visual acuity (BCVA), the mean defect (MD) of visual field in the better eye, and identity in the BIPQ were critical predictors of VRQoL. Illness perceptions independently accounted for 7.8% of the variance in the VRQoL of glaucoma patients. CONCLUSIONS: Patients with stronger illness perceptions and those who perceive themselves as having more glaucoma symptoms are likely to experience worse VRQoL. Illness perceptions in glaucoma patients deserve clinical attention, and further studies are needed to examine whether cognitive interventions targeting illness perceptions can improve VRQoL.

Medication adherence in adult Chinese patients with asthma: role of illness perceptions and medication beliefs.

OBJECTIVE: This study aimed to investigate the relationship between illness perceptions, medication beliefs, and self-reported adherence to inhaled corticosteroid (ICS) therapy in adult Chinese patients with asthma. METHODS: A cross-sectional survey was conducted in the asthma outpatient clinic of Zhongshan Hospital, Fudan University (Shanghai, China) between October 2018 and September 2019. Illness perceptions, medication beliefs, and medication adherence were assessed using validated scales, specifically the Medication Adherence Report Scale for Asthma, Beliefs about Medicines Questionnaire -Specific, and the Brief Illness Perception Questionnaire. Spearman correlation and multiple logistic regression were used to determine the relationship among these factors. Results: A total of 234 patients were included in this study. Of this group, 99 (42.3%) participants were non-adherent to their ICS medication. Medication adherence correlated negatively with 'illness identity' (perceived symptom), 'emotional response' (perceived emotional effect) and concerns about medication (r=-0.16, -0.16 and -0.15, respectively, p < 0.05). After adjusting for illness perceptions, medication beliefs and demographics, beliefs about the necessity of medication (odds ratio [OR]: 1.14, 95% confidence interval [CI]: 1.01-1.30), and emotional response to the disease (OR: 0.89, 95% CI: 0.80-0.99) were significantly associated with medication adherence in patients with asthma. CONCLUSION: Beliefs about the necessity of medication and emotional response to the illness have a strong influence on self-reported medication adherence in adult patients with asthma in China. Interventions targeted adherence improvement among patients with asthma may be tailored to the individual's baseline perceptions and medication beliefs, and focus on modifying inaccurate illness perceptions and medication beliefs as the main targets.

"Dear hair loss"-illness perceptions of female patients with chemotherapy-induced alopecia.

OBJECTIVE: Chemotherapy-induced alopecia (CIA) is one of the most common and distressing side effects of chemotherapy treatment. This study aims to assess the illness perceptions of female patients dealing with CIA, and their associations with demographic and clinical characteristics, coping strategies, and quality of life. The secondary aim was to compare the illness perceptions of patients with CIA with other samples, to help elucidate the specific perceptions of patients with CIA. METHOD: Forty female patients at risk of severe hair loss due to chemotherapy treatment were included at the oncological daycare unit of a teaching hospital in the Netherlands. Patients were asked to complete the Brief-Illness Perception Questionnaire (B-IPQ) and the Hair Quality of Life (Hair-QoL) questionnaire. RESULTS: Illness perceptions indicated that although patients understood their hair loss, they lacked being able to make sense of managing it, negatively impacting patients' lives. Psychological quality of life was significantly correlated with the B-IPQ domains: consequences, degree of concern, and emotional response. Social quality of life was significantly correlated with psychological quality of life. Patients with CIA felt significantly less able to manage their hair loss, compared to patients with breast cancer and psoriatic arthritis. CONCLUSION: As patients' beliefs of being able to manage their hair loss are important for adopting and maintaining adequate coping behaviors, additional effort of health care providers in fostering patients' sense of control is indicated, focusing on patients' strengths during and after chemotherapy treatment. In the context of developing interventions for patients with CIA, consequences, concern, and emotional response are the major dimensions that should be taken in account to help patients deal with hair loss.

Co-designing a behavioural intervention for reducing the impact of chemotherapy-induced peripheral neuropathy symptoms: An evidence- and theory-driven approach.

OBJECTIVE: This study aims to co-design an evidence- and theory-based behavioural intervention to reduce the impact of chemotherapy-induced peripheral neuropathy (CIPN) symptoms on patients' quality of life. METHODS: Guided by the Medical Research Council Framework for developing and evaluating complex interventions, our intervention development process was guided by (a) findings of systematic reviews, (b) inductive analysis of 39 h of observational fieldwork, 12 patient and 11 clinician interviews, (c) deductive analysis using the Common-Sense Model to develop a Self-Regulation Model of CIPN and (d) 17 patients and 18 clinicians co-designing the intervention. RESULTS: CIPN perception and coping behaviours were highlighted as processes to target when co-designing an intervention. The processes targeted in our intervention are CIPN perception and coping behaviours, namely, (a) self-monitoring of symptoms, (b) communicating and early reporting of symptoms to clinicians, (c) participating in making chemotherapy dose reduction decisions with their clinicians and (d) engaging in self-management and safety strategies to reduce impact of CIPN symptoms. To address these, a behavioural intervention was deemed suitable. CONCLUSION: We developed a self-regulation model of CIPN and a logic model for documenting the proposed mechanism of action of our co-designed behavioural intervention for reducing impact of CIPN symptoms.