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Monitoring quality of life (QoL) in patients with cancer can provide insight into functional, psychological and social consequences associated with illness and its treatment. The primary objective of this study is to examine the influence of cultural factors on the communication between the patient and the health care provider and the perceived QoL in women with breast cancer in Japan and the Netherlands. In Japanese and Dutch women with early breast cancer, the number, content and frequency of QoL-related issues discussed at the medical encounter were studied. Patients completed questionnaires regarding QoL and evaluation of communication with the CareNoteBook. The total number, frequency and content of QoL-related issues discussed differed between the two countries. Japanese women (n = 134) were significantly more reticent in discussing QoL-issues than the Dutch women (n = 70) (p <.001). Furthermore, Dutch patients perceived the CareNoteBook methodology significantly more positively than the Japanese patients (p <.001). Both groups supported the regular assessment via a CareNoteBook methodology. Japanese women are more reluctant in expressing their problems with the illness, its treatment and patient-physician communication than Dutch women. [ABSTRACT FROM AUTHOR]

Given the potentially fatal consequences of inadequate adherence with oral anticancer treatment in persons with cancer, understanding the determinants of adherence is vital. This paper aims at identifying psychosocial determinants of adherence to oral anticancer treatment. We reviewed the literature on psychosocial determinants of adherence with oral anticancer treatment, based on published literature in English, from 2015 to present. Literature searches were performed in PubMed, Embase, Web of Science, Cochrane library, Emcare, and PsychINFO, with 'cancer', 'medication adherence', 'psychology', and 'oral anticancer treatment' as search terms. The obtained 608 papers were screened by two independent reviewers. In the 25 studies identified, illness perceptions, medication beliefs, health beliefs, and depression were found to be the major psychosocial determinants of adherence to oral anticancer treatment; sociodemographic and clinical characteristics were found to be of no major importance. The quality of the identified studies as assessed by two independent reviewers was found to be acceptable overall. The majority of papers were from North America and focused on patients with breast cancer; sample size varied from 13 to 1371; adherence was assessed with questionnaires derived from various theoretical models, pill counts and electronic pharmacy records; illness perceptions reflecting adaptive coping, and medication beliefs reflecting high necessity and low concerns were found to be associated with adherence. Psychosocial concepts are major determinants of adherence with oral anticancer treatment. 'Beliefs about medicines' and 'illness perceptions' in particular determine adherence with this treatment. Studies aiming at impacting adherence would benefit from interventions with a solid basis in behavioral theory in order to help health care providers explore and address illness perceptions and medication beliefs. Pre-consultation screening of adherence behavior may be a helpful supportive approach to improve adherence. Blaming the victim ('patients should be educated about the importance of adherence') is better replaced by encouraging health professionals to identify and address maladaptive psychosocial determinants of adherence. [ABSTRACT FROM AUTHOR]

People with pituitary disease report impairments in quality of life. The aim of this study was to elucidate the impact of the pituitary condition on the lives of partners. Four focus groups of partners of people with pituitary disease (Cushing's disease, non-functioning adenoma, acromegaly, prolactinoma) were conducted. Partners mentioned worries related to the pituitary disease and negative beliefs about medication, coping challenges, relationship issues, social issues and unmet needs regarding care. This study emphasizes the importance of not only paying attention to psychosocial well-being of people with pituitary disease but also to their partners. [ABSTRACT FROM AUTHOR]

Objectives: According to the Common Sense Model of self-regulation, cancer survivors construct perceptions of their illness as a (mal)adaptive mechanism. These perceptions might impact on health care use. We aimed to explore the association between illness perceptions and health care use in stage I-II endometrial cancer (EC) survivors, and whether these associations differed by time since diagnosis.Methods: A survey was conducted in 2008 by the population-based PROFILES registry among EC survivors diagnosed between 1999 and 2007. Survivors (n = 742, 77% response) completed the Brief Illness Perception Questionnaire (BIPQ) and questions on health care use in the past 12 months. Clinical data were accessed from the Netherlands Cancer Registry. Multiple logistic regression was used to evaluate the relationship between illness perceptions and health care use.Results: Between 15 and 22% of the survivors had negative illness perceptions. Survivors with more negative perceptions on consequences, timeline, treatment control, identity, cognitive representation, concern, emotion, and emotional representation were more likely to make ≥ 1 visit to their family physician/general practitioner in relation to their cancer when compared with survivors with more positive illness perceptions. More negative perceptions on consequences, timeline, identity, and concern were associated with ≥ 2 general or cancer-related visits to the medical specialists. The association between negative illness perceptions and health care use was more prominent among long-term (>5 years post-diagnosis) EC survivors.Conclusions: Negative illness perceptions among EC survivors were associated with higher health care use. For individuals with maladaptive illness perceptions, visits to their health care provider may reduce worry about their illness. Future research might address the effects of intervening in maladaptive illness perceptions on use of health care in this category of survivors. [ABSTRACT FROM AUTHOR]

Purpose: Cancer survivors construct perceptions of illness as a (mal)adaptive mechanism. These perceptions motivate/drive subsequent self-management behaviors toward symptoms and treatment that influence health outcomes. Negative illness perceptions have been associated with increased mortality in other chronically ill groups. However, this association is under-researched in cancer survivors. We aimed to explore the association between illness perceptions and mortality in stage I-III progression-free colorectal cancer (CRC) survivors.Methods: We used data from the population-based Patient Reported Outcomes Following Initial treatment and Long Term Evaluation of Survivorship (PROFILES) registry of two CRC survivorship studies conducted in 2009 and 2010. We accessed clinical data from the Netherlands Cancer Registry, and mortality data from municipal personal records database. Follow-up was until 31 December 2014. Survivors (n = 1552) completed the Brief Illness Perception Questionnaire. Cox proportional hazard models estimated the association between illness perceptions and mortality.Results: Negative illness perceptions on consequences (adjusted hazard ratio (HRadj) 1.60, 95 % confidence interval (CI) 1.14-2.25) and emotion (HRadj 1.65, 95 % CI 1.18-2.31) were associated with higher mortality, after adjusting for demographic, clinical, and lifestyle factors. Smoking and inadequate physical activity were independently associated with mortality for all Brief Illness Perception Questionnaire (BIPQ) dimensions.Conclusions: Survivors' perceptions of their illness are important as these perceptions may influence health outcomes during survivorship period. Clinical practice needs to identify and address maladaptive illness perceptions to support more adaptive self-management behaviors and enhance survivorship.Implications For Cancer Survivors: Cancer survivors may benefit from interventions that address potentially maladaptive perceptions and encourage more adaptive self-management behaviors. [ABSTRACT FROM AUTHOR]

Purpose: The objective of this sub-analysis of the BeCet study (NCT01136005) was to examine health-related quality of life (HRQoL) of patients experiencing dermatological adverse events (AEs) during the first 6 weeks of epidermal growth factor receptor inhibitor (EGFRI) treatment.Methods: Patients (n = 85) treated with EGFRI completed five questionnaires during the first 6 weeks of treatment. 77 patients provided enough data for the sub-analysis. Experienced AEs were reported in the Dermatological Reactions Targeted Therapy-Patients (DERETT-P), a symptom experience diary for patients treated with targeted therapy. The impact of EGFRI-associated dermatological adverse events on HRQoL was examined using four HRQoL questionnaires; the Functional Assessment of Cancer Therapy-EGFRI (FACT-EGFRI-18), the Functional Assessment of Cancer Therapy-General (FACT-G), the 36-Item Short Form Health Survey (SF-36), and the Skindex-16.Results: During the first 6 weeks of EGFRI treatment, physical discomfort was the most significantly affected domain. In the entire study population, xerosis (dry skin) (22.3 %) and pruritus (itchy skin) (16.9 %) were reported as the most impactful AEs. For patients experiencing a papulopustular eruption (acneiform rash) pruritus (24.2 %), xerosis (18.9 %), and papulopustular eruption (6.3 %) were reported as the most impactful AEs. Papulopustular eruption, xerosis, and pruritus all showed a significant negative effect on HRQoL, displayed in FACT-EGFRI-18 scores.Conclusions: In addition to papulopustular eruption, xerosis and pruritus are major EGFRI-associated dermatological AEs with an impact on HRQoL, which warrant more attention in clinical practice and research. [ABSTRACT FROM AUTHOR]

The Netherlands has a unique perinatal healthcare system with a high rate of home births and very early discharge after delivery in hospital. Although we demonstrated that pulse oximetry (PO) screening for critical congenital heart disease is feasible in the Netherlands, it is unknown whether parents find the screening acceptable when performed in home birth setting. We assessed the acceptability of PO screening to mothers after screening in home setting. A questionnaire was sent electronically to mothers who gave birth and/or had postnatal care under supervision of a community midwife participating in the Pulse Oximetry Leiden Screening (POLS) study, a feasibility study of PO screening in the Dutch care system, performed in the Leiden region, the Netherlands. The questionnaire included questions based on satisfaction, general feelings, and perceptions of PO screening. A total of 1172/1521 (77%) mothers completed the questionnaire. Overall, mothers were happy with the performance of the test (95%), thought their baby was comfortable during the screening (90%) and did not feel stressed while the screening was performed (92%). Most mothers would recommend the test to others (93%) and considered the test important for all babies (93%).Conclusion: Mothers of newborns participating in the study found the PO screening acceptable when performed at home. What is Known: • Pulse oximetry screening for critical congenital heart defects is (cost)effective and acceptable to mothers when performed in hospital. What is New: • Pulse oximetry screening for critical congenital heart defects is also acceptable for mothers when the screening is performed at home. [ABSTRACT FROM AUTHOR]

Objective: To assess the reliability of the Medication Adherence Report Scale (MARS-5) for assessing adherence in clinical practice and research.Methods: Prospective cohort study following electronically measured inhaled corticosteroids (ICS) adherence for 1 year in 2–13-year-old children with persistent asthma. The relationship between electronically measured adherence and MARS-5 scores (ranging from 5 to 25) was assessed by Spearman's rank correlation coefficient. A ROC (receiver operating characteristic) curve was performed testing MARS-5 against electronically measured adherence. Sensitivity, specificity, positive and negative likelihood ratios of the closest MARS-5 cut-off values to the top left-hand corner of the ROC curve were calculated.Results: High MARS scores were obtained (median 24, interquartile range 22–24). Despite a statistically significant correlation between MARS-5 and electronically assessed adherence (Spearman's rho = 0.47;p< 0.0001), there was considerable variation of adherence rates at every MARS-5 score. The area under the ROC curve was 0.7188. A MARS-5 score ≥23 had the best predictive ability for electronically assessed adherence, but positive and negative likelihood ratios were too small to be useful (1.65 and 0.27, respectively).Conclusions: Self-report using MARS-5 is too inaccurate to be a useful measure of adherence in children with asthma, both in clinical practice and in research. [ABSTRACT FROM PUBLISHER]

The rheumatology field is moving towards identifying individuals with an increased risk for rheumatoid arthritis (RA) at a stage when arthritis is still absent but persons having clinically suspect arthralgia (CSA). Incorporating patients' views in rheumatologic care is pivotal; however, the views of persons with CSA on their condition are unknown. We aimed to help fill this gap by exploring illness perceptions of persons with CSA and their views on hypothetical prognoses for developing RA. Persons with CSA were invited to participate in a semi-structured focus group discussion. Illness perceptions according to the Common Sense Model (CSM) and four a priori formulated themes were explored in detail during the group discussion. The discussion was audio-taped and transcribed verbatim. Transcripts were analysed in an interpretative phenomenological approach manner, on the basis of the dimensions of the CSM by three researchers independently. The views of four participants with CSA were explored during one focus group discussion. Four dimensions of the CSM were mainly observed: Identity, Consequences, Personal Control and Concern. None of the patients identified themselves as being a patient. They did experience pain and impairments in daily functioning and were concerned that their symptoms would progress. In the absence of physician-initiated treatment, some patients changed lifestyle in order to reduce pain and to promote health. Patients unanimously said that they could not interpret prognostic information on RA development expressed in hypothetical chances. Persons with CSA do not consider themselves patients. Prognostic information related to the development of RA based on risk percentages was considered as not useful by persons with CSA. Understanding of the illness perceptions of persons with CSA by health care professionals might improve medical management and facilitate shared decision-making. [ABSTRACT FROM AUTHOR]

Context: Sickle cell disease (SCD) and thalassemia are rare but chronic blood disorders. Recent literature showed impaired quality of life (QOL) in people with these blood disorders. Assessing one of the determinants of QOL (i.e. illness perceptions) therefore, is an important next research area. Objective: We aimed to explore illness perceptions of people with a blood disorder with drawings in addition to the Brief Illness Perception Questionnaire (Brief IPQ). Drawings are a novel method to assess illness perceptions and the free-range answers drawings offer can add additional insight into how people perceive their illness. Method: We conducted a cross-sectional study including 17 participants with a blood disorder. Participants’ illness perceptions were assessed by the Brief IPQ and drawings. Brief IPQ scores were compared with reference groups from the literature (i.e. people with asthma or lupus erythematosus). Results: Participants with SCD or thalassemia perceived their blood disorder as being more chronic and reported more severe symptoms than people with either asthma or lupus erythematosus. In the drawings of these participants with a blood disorder, a greater number of blood cells drawn was negatively correlated with perceived personal control (P<0.05), indicating that a greater quantity in the drawing is associated with more negative or distressing beliefs. Conclusion: Participants with a blood disorder perceive their disease as fairly threatening compared with people with other chronic illnesses. Drawings can add additional insight into how people perceive their illness by offering free-range answers. [ABSTRACT FROM AUTHOR]

Objective. Coping responses have been shown to determine health outcomes in chronic diseases. The aim of the study was to examine the role of joint-specific factors and coping styles on disability in patients with hand OA. Methods. Primary hand OA patients who consulted secondary care, underwent physical examination to assess the number of joints with bony joint enlargements, pain upon palpation, soft tissue swelling, deformities and limitations in motion. Coping styles were assessed with Coping with Rheumatic Stressors. Disability (score 55) was assessed by the Functional Index for Hand OA (possible score 0-30) cross-sectionally and after 1 year. With multivariate logistic regression, joint-specific variables and coping styles were associated with disability cross-sectionally and after 1 year, adjusted for age, sex and BMI. Results. A total of 314 patients (88% women, mean age 61.4 years) were included in the cross-sectional analyses; 68% were considered as disabled. Longitudinal data after 1 year were available in 173 patients (71% disabled). In multivariate analysis including all joint-specific factors, only painful joints and joints with limitations in motion were associated with disability. Disadvantageous scores for the coping scales (comforting cognitions, decreasing activity and pacing) were positively associated with disability cross-sectionally. Disability after 1 year was only associated with the coping scales decreasing activity and pacing. Joint-specific factors were also associated with disability, independent of coping styles. Conclusion. In patients with hand OA, joint-specific factors and coping styles decreasing activity and pacing were both associated with disability. Our results suggest that interventions should aim at jointspecific complaints as well as changing coping styles to improve functional outcome. [ABSTRACT FROM AUTHOR]

Objectives/hypothesis: Drawings made by patients are an innovative way to assess the perceptions of patients on their illness. The objective of this study, at a university tertiary referral center, on patients who have recently been diagnosed with vestibular schwannoma, was to examine whether patients' illness perceptions can be assessed by drawings and are related to their quality of life.Study Design: Cross-sectional study.Methods: Patients diagnosed with vestibular schwannoma (mean age [range], 55.4 [17-85] years) between April 2011 and October 2012 were included (N = 253). Sociodemographics, illness perceptions (Brief Illness Perception Questionnaire [B-IPQ]), and disease-specific quality of life (Penn Acoustic Neuroma Quality of Life [PANQOL] scale) were assessed to evaluate the impact of being diagnosed with vestibular schwannoma. Furthermore, patients' drawings of their tumor were analyzed to explore the association between illness perceptions, drawings, and quality of life.Results: Comparison of the B-IPQ scores of the current sample (N = 139; response rate 54.9%) with other disease samples shows a significantly lower score for patients with vestibular schwannoma on the Coherence dimension, indicating a low understanding of the illness. Illustration of emotions (N = 12) in the drawings gave a negative association with quality of life. Intercorrelations indicate a positive association between a low amount of physical and emotional consequences of the illness and a higher score on the Balance, Hearing, and Energy dimensions of the PANQOL.Conclusions: Patients' drawings give an insight into their perception of the tumor inside their head. Use of drawings may be helpful when developing and offering self-management programs. Quality of life appears to be significantly affected by the diagnosis.Level Of Evidence: 4. [ABSTRACT FROM AUTHOR]

Context and objective: Patients with acromegaly have persistent complaints despite long-term biochemical control. Drawings can be used to assess patients' perceptions about their disease. We aimed to explore the utility of the Drawing Test and its relation to illness perceptions and quality of life (QoL) in patients after long-term remission of acromegaly. Design: Cross sectional study. Methods:: Fifty patients after long-term remission (mean±SE:16±1.2 yr,) of acromegaly. Patients completed the Drawing Test (two retrospective drawings of their body perception before acromegaly and during the active phase of acromegaly, and one drawing on the current condition after long-term remission), Illness Perception Questionnaire-Revised, Physical Symptom Checklist, EuroQoL-5D, and AcroQoL. Results: Patients perceived a dramatic change in body size during the active state of the disease compared with the healthy state prior to the awareness of acromegaly. Patients reported that their body did not completely return to the original proportions after long-term remission. In addition, larger drawings indicated more negative consequences (P<0.05), a higher score on emotional representations (P<0.05) and more perceived symptoms that were attributed to acromegaly (P<0.01). Larger drawings also indicated more impaired QoL, especially disease-specific QoL (all P<0.05). Conclusion: There are strong correlations between the Drawing Test, illness perceptions, and QoL. The Drawing Test appears to be a novel and relatively easy tool to assess the perception of patients after long-term remission of acromegaly. The assessment of drawings may enable health care providers to appreciate the perceptions of patients with long-term remission of acromegaly, and enable discussion of symptoms and remission. [ABSTRACT FROM AUTHOR]

Adherence to daily inhaled corticosteroid therapy is a key determinant of asthma control. Therefore, improving adherence to inhaled corticosteroids is the most effective method through which healthcare providers can help children with uncontrolled asthma. However, identifying non-adherent patients is difficult, and electronic monitoring is the only reliable method to assess adherence. (Non-)adherence is a complex behavioural process influenced by many interacting factors. Intentional barriers to adherence are common; driven by illness perceptions and medication beliefs, patients and parents deliberately choose not to follow the doctor's recommendations. Common non-intentional barriers are related to family routines, child-raising issues, and to social issues such as poverty. Effective interventions improving adherence are complex, because they take intentional and non-intentional barriers to adherence into account. There is evidence that comprehensive, guideline-based asthma self-management programmes can be successful, with excellent adherence and good asthma control. Patient-centred care focused on healthcare provider-patient/parent collaboration is the key factor determining the success of guided self-management programmes. Such care should focus on shared decision-making as this has been shown to improve adherence and healthcare outcomes. Current asthma care falls short because many physicians fail to adhere to asthma guidelines in their diagnostic approach and therapeutic prescriptions, and because of the lack of application of patient-centred health care. Increased awareness of the importance of patient-centred communication and increased training in patient-centred communication skills of undergraduates and experienced attending physicians are needed to improve adherence to daily controller therapy and asthma control in children with asthma. [ABSTRACT FROM AUTHOR]

Axillary lymph node dissection and axillary radiation as part of breast cancer treatment often result in arm and shoulder morbidity and limitations in daily functioning. Over and above the general benefits for cardiorespiratory fitness, Nordic Walking particularly targets at the muscles of the upper extremities and shoulder. This may increase shoulder range of motion and lead to a reduction in functional limitations. The aim of this study was to offer a Nordic Walking intervention to women after treatment for breast cancer and to investigate changes in subjective well-being and shoulder function. Three supervised Nordic Walking courses were organized (2009–2011). The intervention consisted of ten weekly 1-hour sessions focusing on upper body strength and condition. In total, 28 women participated in one of the cohorts. Results showed that after 10 weeks, patients’ vitality had improved, whereas perceived shoulder symptom severity and limitations in daily activities had decreased. Goniometric data indicated that range of motion (forward flexion, abduction, and external rotation) of the affected shoulder improved significantly within 10 weeks of training. Group interviews at 6 months follow-up confirmed that patients had appreciated the physical and psychosocial benefits of the intervention. These benefits outweighed the practical disadvantages. Patient selection, assessment and training should take place under (para-)medical supervision and group instructors should have the knowledge and skills to work with a group of recent cancer survivors. Results from this explorative study suggest that Nordic Walking is a feasible and potentially valuable tool in the rehabilitation of patients with breast cancer. [ABSTRACT FROM PUBLISHER]

Objective: Effective self-management and adherence to inhaled corticosteroids are issues of particular interest in comprehensive asthma care. In spite of this care, however, a number of parents and children remain non-adherent. The reasons for this non-adherence have up till now been unknown, because previous adherence studies have based their findings either on populations with poor adherence or on unreliable self-reported adherence. This study was designed to explore factors that contribute to persistent non-adherence to inhaled corticosteroids in children ranging between 2 and 12 years of age receiving comprehensive asthma care, with adherence assessed objectively. Methods: This qualitative study was based on in-depth interviews which took place in the homes of parents whose children had completed a one-year follow-up of electronically measured adherence to inhaled corticosteroids. Rich and comprehensive descriptions of parents' own accounts of self-management behavior were obtained using active listening techniques. Each interview was recorded and transcribed verbatim followed by data analysis using standard methodology for qualitative studies. Results: Twenty children's parents (mean age 5.9 years) were interviewed. Distinctive patterns of modifiable barriers to adherence emerged, including a novel finding of parents misjudging their child's ability to manage the daily use of medication by him/herself. Persistent non-adherence appeared to be caused by a number of maintaining factors. Most noticeable factors were unawareness of non-adherence by both parents and health care providers, a lack of parental drive to achieve high adherence and ineffective parental problem-solving behaviour. Conclusions: This study has identified modifiable barriers to adherence in families participating in a comprehensive asthma care programme. Future studies are needed to verify our novel findings and to investigate whether interventions around these barriers are needed to increase the effectiveness of asthma care programs [ABSTRACT FROM AUTHOR]

Objectives This study examined the cross-sectional and longitudinal relationships of illness perceptions, coping, and distress in women with breast cancer. Illness perceptions and coping at baseline and changes in these variables over time served as possible predictors of distress at two follow-up points. Design and methods Fifty-seven women with breast cancer who participated in a psychosocial aftercare programme completed a questionnaire before the start of the intervention, directly after the end of the intervention, and 1 year after the start of the intervention. Study variables were assessed with the Illness Perception Questionnaire-Revised (illness perceptions), the COPE (coping), and the Hopkins Symptom Check List (distress). Results Results showed that 43% of variance in distress at baseline was explained by participants' illness perceptions. Cyclical timeline perceptions were the strongest predictor of distress at baseline. Longitudinal data revealed that after the end of the intervention, the intensity of general distress and breast cancer-related emotions had decreased significantly. Partial correlations showed that baseline illness perceptions were unrelated to distress at follow-up. However, changes in illness perceptions (perceptions about the cyclical and chronic timeline and symptoms associated with breast cancer) showed significant associations with distress at both follow-up assessments. Associations of follow-up distress with coping styles were less consistent. Conclusions Our results suggest that changes in illness perceptions are related to an improvement or worsening of patients' emotional well-being over time. These findings hold promise for the development of interventions that specifically target patients' representations of their illness. Statement of contribution What is already known on this subject? Research has shown that 15%-30% of breast cancer survivors continue to experience elevated distress following treatment. Illness perceptions and coping have been found to contribute to distress in women with breast cancer. What does this study add? Cyclical timeline beliefs affect distress in breast cancer both in cross-sectional and longitudinal analyses. Baseline illness perceptions are less predictive of distress at follow-up than changes in illness perceptions. [ABSTRACT FROM AUTHOR]

Aim The aim of this prospective study was to examine the association between behavioural problems and medical and psychological outcomes in clinically treated children and adolescents with asthma. Methods Patients (n = 134) were recruited from two high-altitude asthma clinics in Switzerland and one asthma clinic in the Netherlands. Outcome measures were Asthma Control Test ( ACT), Paediatric Asthma Quality of Life Questionnaire ( PAQLQ( S)), forced expiratory volume in 1 sec ( FEV1) and fractional concentration of exhaled nitric oxide ( Fe NO). Parents completed the Child Behaviour Checklist ( CBCL) (predictor variable). Data were collected at the start and end of treatment. Multiple regression analysis was used while adjusting for demographic variables, clinic and length of stay. Results More severe internalizing behavioural problems were associated with less improvement of total quality of life ( t = −2.26 , p = 0.03) and the domains symptoms ( t = −2.04 , p = 0.04) and emotions ( t = −2.3 , p = 0.02) after clinical treatment. Behavioural problems were not associated with a change of lung function measurements ( FEV1 and Fe NO) and asthma control ( ACT) during treatment. Conclusion A focus of healthcare professionals on the treatment of internalizing behavioural problems may optimize the quality of life in clinically treated youth with asthma. [ABSTRACT FROM AUTHOR]

Background The aim of this study was to provide insight into the relationship between information provision and illness perceptions among cancer survivors. Methods All individuals diagnosed with lymphoma, multiple myeloma, endometrial or colorectal cancer between 1998 and 2008, as registered in the Eindhoven Cancer Registry, were eligible for participation. In total, 4446 survivors received a questionnaire including the EORTC-QLQ-INFO25 and the Brief Illness Perception Questionnaire; 69% responded ( n = 3080). Results Lymphoma and multiple myeloma patients were most satisfied with the information they received, and they perceived to having received more information about their treatment and other services (after care) compared with colorectal and endometrial cancer survivors ( p < 0.05). Multiple myeloma patients reported the highest scores (conceptualized their illness as very serious) on the illness perception scales. The perceived receipt of more disease-specific information was associated with more personal and treatment control and a better understanding of the illness, whereas the perceived receipt of more information about other services was associated with more negative consequences of the illness on the patients' life, longer perceived duration of illness, less treatment control, more symptoms attributable to the illness, less understanding of, and stronger emotional reaction to the illness ( p < 0.05). Satisfaction with the received information was associated with better illness perception on all subscales, except for personal control ( p < 0.05). Conclusion Improving the patients' illness perceptions by tailoring the information provision to the needs of patients may help patients to get a more coherent understanding of their illness and will possibly lead to a better health-related quality of life. Copyright © 2012 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Knowledge on cross-cultural quality of life (QOL) and illness perceptions may help women with breast cancer cope more effectively. The self regulation model (SRM) guided the current exploratory longitudinal pilot-study. Central to SRM is the perception of health threats and their effects on QOL. Illness perceptions and QOL were assessed in 22 Dutch and 21 Japanese patients with breast cancer who filled out questionnaires before, 1 week, and 8 weeks after the first chemotherapy course. The questionnaires assessed QOL and illness perceptions. Patients’ scores were compared with groups of patients with other chronic somatic illnesses (asthma, diabetes). Patients in both samples reported major impact of chemotherapy on global health status, physical functioning, role functioning, emotional functioning, constipation and diarrhea. Differences between Japanese and Dutch patients were limited to social functioning and financial problems. Japanese patients expressed stronger concerns about their illness than Dutch patients. Results of the Japanese and Dutch patients with breast cancer differed from data in patients with asthma on consequences, timeline, concern and emotional response. Results of Japanese patients differed from patients with type 2 diabetes on timeline and concern, whereas Dutch patients differed on timeline and consequences. Japanese and Dutch breast cancer patients have—overall—similar illness perceptions and QOL responses and are aware of the typical characteristics of their disease. The results support the feasibility of cross-cultural psychosocial research in oncology and offer implications for clinical interventions which impact on self-efficacy to empower patients with breast cancer. [ABSTRACT FROM PUBLISHER]

Aim: To assess prevalence of behavioural problems in preschool children with asthma with electronically verified exposure to inhaled corticosteroids (ICS). Methods: Cross-sectional study of 81 children 2-5 years of age using daily ICS for persistent asthma. During 3 months' follow-up, adherence to ICS treatment was recorded by an electronical logging device (Smartinhaler®). Parents completed the Child Behavior Checklist 1.5-5 years (CBCL 1.5-5) to assess behavioural problems; results were compared to a published reference group of healthy children. Results: The median (interquartile range) adherence to ICS was 92 (78-97) %. There was no difference in total CBCL score between children with asthma on ICS (mean, [SD] 32.10 [1.99]) and the reference group (33.30 [1.87], 95% CI for difference −6.62 to 4.22). Children with asthma were more likely to have somatic complaints (95% CI for difference 0.64 to 1.96) and less likely to have anxious/depressive symptoms (95% CI for difference −1.57 to −0.25) than the reference group. CBCL scores were not significantly related to the electronically measured adherence rates. Conclusions: Maintenance treatment with ICS, taken daily as prescribed, is not associated with an increased risk of behavioural problems in preschool children. [ABSTRACT FROM AUTHOR]

Background: Although international guidelines on pulmonary rehabilitation acknowledge that psychological factors contribute to exercise intolerance in patients with chronic obstructive pulmonary disease (COPD), the few empirical studies investigating this association have found inconsistent results. Purpose: The purpose of this study is to investigate whether negative affect and beliefs about exercise of patients with COPD would be related to baseline 6-min walk (6-MW) test results in a pulmonary rehabilitation setting, after correction for physical variables (sex, age, height, weight, and lung function). A second aim was to examine whether patients' beliefs are associated with treatment outcomes, as measured by an improvement in 6-MW distance. Method: A 12-week pulmonary rehabilitation program was completed by 166 patients. Beliefs (perceived necessity and concerns) about exercise and negative affect were assessed by a questionnaire. Clinical data were obtained from medical records. Results: Baseline 6-MW distance was positively related to younger age, male gender, better pulmonary function, and having fewer concerns about exercise. After rehabilitation, patients had increased their walk distance by 12% (32 m), on average. Baseline physiological and psychological variables were unrelated to patients' response to treatment (increase in walk distance). However, subgroup analysis showed that for patients with mild to moderate airflow obstruction, concerns about exercise were negatively related to response to treatment. Conclusion: We conclude that patients' beliefs about the negative consequences of exercise are associated with baseline 6-MW test performance and response to treatment for patients with mild to moderate COPD. We recommend that patients' concerns about exercise are discussed and, if necessary, corrected during the intake phase. [ABSTRACT FROM AUTHOR]

As part of the development of a quality of life monitor for women with breast cancer, a qualitative acceptability test was conducted among 10 patients, to assess their suggestions for improvement. Next, a field test was conducted among 50 women with breast cancer receiving radiotherapy, chemotherapy, or both treatments to examine the use of the monitor in daily practice and to assess physicians’ and patients’ experiences with the monitor. Although patients in general held a positive attitude toward the monitor and compliance was high, patients regularly were unsure about how the quality of life information was used by physicians. [ABSTRACT FROM PUBLISHER]

Objective: Illness perceptions pertain to the pattern of beliefs patients develop about their illness. Illness perceptions are determinants of quality of life (QoL). Factors contributing to persisting impaired QoL after Cushing's syndrome (CS) remain largely unknown. Therefore, the objective of this study was to explore illness perceptions, as potentially modifiable psychological factors, in relation to QoL in patients with long-term remission of CS. Design: Cross-sectional study. Methods: We included patients with long-term remission of CS (n=52). Illness perceptions were evaluated using the Illness Perception Questionnaire (IPQ)-Revised, and QoL was measured using the physical symptom checklist, EuroQoL-5D (EQ-5D), and the CushingQoL. Reference data were derived from recent studies and included patients with vestibular schwannoma (n=80), acute (n=35) or chronic (n=63) pain, and chronic obstructive pulmonary disease (COPD; n=171). Results: Illness perceptions showed a strong correlation with QoL. Patients with CS scored distinctively more negative on the IPQ compared with patients with vestibular schwannoma and patients with acute pain, and also reported more illness-related complaints (all P<0.01). There were also some differences in illness perceptions between patients with CS and patients with chronic pain and patients with COPD, but there was no distinct pattern. Conclusions: Patients after long-term remission of CS report more negative illness perceptions compared with patients with other acute or chronic conditions. Further research is needed to assess whether QoL in CS can be improved by addressing these illness perceptions, for example, by a self-management intervention program. [ABSTRACT FROM AUTHOR]

Goals Of Work: This paper presents an observational study of the longitudinal effects of cancer treatment on quality of life (QoL) in patients treated for head and neck squamous cell carcinoma (HNSCC), and evaluated the contribution of patients' baseline illness cognitions to the prediction of QoL 2 years after diagnosis.Patients and Methods: One hundred seventy-seven patients eligible for primary treatment for HNSCC completed the Illness Perception Questionnaire-Revised at baseline and the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire-30 at baseline, at 1-year and 2-year follow-ups.Main Results: Compared to baseline, patients reported better emotional functioning at both follow-ups (p < 0.001), worse social functioning at 12 months (p < 0.05), and better global health status at 24 months (p < 0.05). Patients' own implicit common sense beliefs about their illness added small but significant amounts of variance to the prediction of QoL after 2 years. Less belief in own behavior causing the illness predicted better functioning and better global health. Strong illness identity beliefs predicted worse functioning and worse global health. Negative perceptions about the duration of the illness (chronic timeline beliefs) and more negative perceived consequences also predicted worse QoL.Conclusions: Our results on the negative perceptions about the duration of the illness, perceived consequences, and high symptom awareness predicting worse QoL illustrate the detrimental effects of uncertainty and negative expectations about the future course of the illness. The identification of these cognitive factors provides possible targets for counseling strategies to assist patients in long-term adjustment to HNSCC. [ABSTRACT FROM AUTHOR]

This paper evaluates the scale structure of the EORTC QLQ-STO22 gastric cancer module using Japanese validation data. We additionally tested two single items regarding dumping syndrome. Of 246 patients who participated in phase II clinical trials of chemotherapy to treat advanced gastric cancer, we analyzed 206 who completed the pretreatment questionnaire. The factor analysis supported the scale structure hypothesized for the initial development phase conducted by the EORTC Quality of Life Group, not the alternations made in the final psychometric testing phase. The elicited scales exhibited high internal consistency and high clinical validity. Our data suggest that there is no need to examine the dumping syndrome items. This study revealed a slightly different scale structure of the QLQ-STO22 from that obtained in the European study. Extensive discussions with the EORTC Group are needed from both cross-cultural and clinical perspectives in order to establish a consensus on the various language versions of the QLQ-STO22. Copyright © 2007 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

This study aimed at identifying cognitive and emotional representations relevant for improving health care communication and quality of life (QoL) in patients with chronic obstructive pulmonary disease (COPD). One-hundred-seventy-one COPD outpatients completed questionnaires on illness perceptions and QoL. After controlling for the effects of age, pulmonary function, and dyspnea, patients with decreased attention to symptoms, with more positive beliefs about the effects and outcomes of their illness, and with less strong emotional reactions to the illness, had higher QoL scores. The results of this study are discussed in relation to the associations found in other illnesses. [ABSTRACT FROM AUTHOR]

This review contains a practical guide as well as a number of design and analytical methods for conducting health-related quality of life assessments in clinical trials for gastric cancer treatment. Although we address issues specific to the assessment of gastric cancer, many are applicable to clinical trials for different cancer types. [ABSTRACT FROM AUTHOR]

This study sought to investigate the contribution of illness perceptions and coping mechanisms to the explanation of well-being of patients with Huntington's disease (HD). We investigated the Leventhal et al. assumption of the Self-regulation Model that coping mediates the relationship between illness perceptions and patients’ well-being. Illness perceptions, coping, and well-being in 77 HD patients were assessed with validated questionnaires; motor performance and cognitive performance were assessed with Huntington's disease-specific measures. The assumption that illness perceptions influence HD patients’ well-being via coping was not supported. The results indicate that both coping and illness perceptions made a major contribution to the explanation of variance in HD patients’ psychosocial well-being. Variance in their physical well-being was explained by illness perceptions mainly. The need to conduct further research on the interrelationships between illness perceptions, coping, and well-being in this patient category is discussed. [ABSTRACT FROM AUTHOR]

Background. The purpose of this study was to investigate which illness perceptions of patients recently diagnosed with head and neck cancer explain variance in their quality of life (QOL) to identify potential targets for interventions aimed at improving QOL. Methods. Sixty-eight patients (mainly with stage III and IV disease) completed the Illness Perception Questionnaire-Revised (IPQ-R) and the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ-C30). Results. Pretreatment cross-sectional results from this prospective study show that, after controlling for age and comorbidity, illness perceptions were significantly related to the QLQ-C30 physical, role, emotional, cognitive, social functioning, and global health subscales. Patients with increased attention to symptoms, who believed in a greater likelihood of recurrence, who were more likely to engage in self-blame, and who had a stronger emotional reaction to the illness had lower QOL scores. Conclusion. Our results suggest that restructuring negative pretreatment illness perceptions may help patients to cope more adequately during and after treatment. © 2005 Wiley Periodicals, Inc. Head Neck27: XXX–XXX, 2005 [ABSTRACT FROM AUTHOR]

Objective - To identify the most useful combinations of symptoms and the results of radioallergosorbent tests (RASTs) and skin prick tests (SPTs) for the diagnosis of allergic rhinitis. Design - A prospective comparison was made of symptoms and the results of RASTs and SPTs with 7 different nasal allergies; the references used were the “consensus diagnoses” provided by 3 experts. Setting - Nineteen general practices in The Netherlands. Patients - 365 consecutive patients aged 12 or over who visited their general practitioner because of chronic or recurrent nasal symptoms between 1 March 1990 and 1 March 1991. Main outcome measures - The most useful combinations of items from the history, RASTs, and SPTs, for the diagnosis of 7 different nasal allergies; the predictive probabilities of these combinations. Results - Diagnostic criteria could be drawn up resulting in a near-perfect discrimination between patients diagnosed as having allergic rhinitis and patients diagnosed as not having allergic rhinitis. Most of these criteria combined only a single item from the history with either RAST or SPT. For nearly all nasal allergies, both the negative predictive probabilities and the positive predictive probabilities were 97% or more. Conclusions - The common nasal allergies can be diagnosed with a very high certainty with the aid of simple diagnostic criteria. Data from a strictly limited case history combined with either RAST or SPT are sufficient. [ABSTRACT FROM AUTHOR]

The aim of this study was to estimate the prevalence of depressive symptoms and depressive disorder (ICHPPC-2-defined) in patients over 65 years of age. A cross-sectional, partly two-phased, study was performed in general practices in The Netherlands. A total of 384 consecutive patients aged 65 and above, 116 men and 265 women were included, both during practice visits and home visits. Depressive symptoms were recorded with the Zung Self-rating Depression Scale, the Geriatric Depression Scale, and with physician ratings. Assessments of depressive disorder were based on an adaptation of interview ratings with the Montgomery Åsberg Depression Rating Scale. The proportion of patients considered to have depressive symptoms ranged from 11 to 29% of patients, depending on the self-report instrument and the cut-off point. According to interviews a depressive disorder was estimated to be present in 17%. The high prevalence of depressive symptoms and depressive disorder suggest a higher index of suspicion of depres sion in elderly general practice patients. [ABSTRACT FROM PUBLISHER]

Background. Self-regulation theory explains how patients’ illness perceptions influence self-management behaviour (e.g. via adherence to treatment). Following these assumptions, we explored whether illness perceptions of ESRD-patients are related to mortality rates. [ABSTRACT FROM PUBLISHER]

Asthma treatment according to guidelines fails frequently, through patients' nonadherence to doctors' advice. This study aimed to explore how differences in asthma care influence parents' perceptions to inhaled corticosteroids (ICS). We conducted six semistructured focus groups, including 44 parents of asthmatic children (2-12 years of age, treated in primary or specialist care). Verbatim transcripts were analysed with standard qualitative research methods. Parents decided deliberately whether ongoing ICS use was useful for their child. This decision was based on their perceptions about illness and medication. In primary care, this issue was hardly ever discussed with the health care provider because regular scheduled follow-up was unusual. In specialist care, regular scheduled follow-up was usual, and parental perceptions about illness and medication were discussed and modified when needed. Parent-reported adherence was lower in primary care than in specialist care. This focus group study illustrates how strongly parental perceptions of illness and medication influence adherence to health care providers' advice and that such perceptions can be modified within a strong doctor-patient partnership, improving adherence. [ABSTRACT FROM AUTHOR]