Mapping EORTC-QLQ-C30 onto EQ-5D-5L Index in Indonesian Cancer Patients.

OBJECTIVE: This study aims to develop a mapping algorithm for EORTC QLQ-C30 to EQ-5D-5L which can produce utility values in patients with cancer. METHODS: We used a cross sectional study design with 300 cancer patients. The research instruments used were EORTC QLQ-C30 and EQ-5D-5L. Data were collected by interviewing cancer patients who were hospitalized in the Kasuari Installation of Dr Kariadi Hospital Semarang, Indonesia. The Ordinary Least Squares (OLS) regression method was used to predict the utility value of EQ-5D-5L. This study uses two models to predict utility values, namely model 1 with all domains, and model 2 with domains that affect the EQ-5D-5L. The predictive power of regression on the model is evaluated by calculating the mean absolute error (MAE) and root mean square error (RMSE) values. RESULT: The highest score in the functional domain is the 'emotional function' domain (mean: 85.89; SD: 16.04) and the highest symptom domain is 'weakness' (mean: 36.21; SD:21.69). The predicted utility values of models 1 and 2 are 0.683. The mean absolute error (MAE) and root mean square error (RMSE) values of model 1 are 0.128 and 0.173, while in model 2 the MAE and RMSE values obtained are 0.125 and 0.168. CONCLUSION: The development of the mapping algorithm from the EORTC QLQ-C30 to EQ-5D-5L instrument shows a predictive value of utility in a sample of patients with cancer at Dr. Kariadi Hospital, Semarang, Indonesia. The utility prediction in both model is similar, however model 2 involves fewer domains and symptoms.
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Effects of a Self-Monitoring Quality of Life Intervention in Outpatients with Breast Cancer: A Preliminary Report of A Randomized Controlled Trial.

OBJECTIVE: This preliminary report used data from a randomized controlled clinical trial to investigate the beneficial effects of a self-monitoring quality of life (SMQOL) intervention on communication, medical care and patient outcomes in Japanese women with breast cancer. METHODS: This study compared a SMQOL intervention group with a control group that received usual care after 4 months on self-efficacy aspects of patient-physician communication among outpatients with breast cancer in Japan using the Perceived Efficacy in Patient-Physician Interactions (PEPPI) questionnaire. Patients were randomly assigned to the intervention and control groups using permuted-block randomization. The intervention groups were asked to complete a paper-based quality-of-life (QOL) questionnaire in addition to the usual care provided in the control group. Analysis of covariance was used to assess the difference in PEPPI scores between the intervention and control groups. Additionally, subgroup analyses were performed for outpatients with breast cancer accompanied by depression or anxiety. RESULTS: In total, 232 patients were eligible for this study and randomized. Seven patients did not answer the PEPPI questionnaire at baseline after group allocation, leaving 225 patients for inclusion in the analyses. The modified intention-to-treat ITT analysis showed the SMQOL intervention had no significant effect on PEPPI total score (P = 0.226). We found a significant between-group difference in PEPPI total score in the anxiety group (P = 0.045), namely, the self-efficacy aspects of patient-physician communication of those with anxiety in the intervention group were better than for those in the control group after 4 months. CONCLUSION: Use of the SMQOL had beneficial effects on communication self-efficacy between patients and physicians for outpatients with breast cancer, those with anxiety.

Illness perceptions and health-related quality of life in individuals with overweight and obesity.

INTRODUCTION: To understand how individuals (self-)manage obesity, insight is needed into how patients perceive their condition and how this perception translates into health outcomes (e.g., health-related quality of life, HRQOL). Our objectives were (1) to examine illness perceptions in individuals with overweight and obesity, and (2) to investigate associations of these perceptions with physical and mental HRQOL. METHODS: In a cross-sectional analysis of the Netherlands Epidemiology of Obesity Study (n = 6432; 52% women), illness perceptions were assessed using the Brief Illness Perception Questionnaire, and HRQOL was assessed using the 36-Item Short-Form Health Survey. Illness perceptions were calculated for different categories of overall, abdominal, and metabolically unhealthy obesity. We investigated associations of illness perceptions with HRQOL using BMI-stratified multivariable linear regression analyses. RESULTS: Compared to individuals with normal weight, individuals with obesity believed to a higher extent that their condition had more serious consequences [Mean Difference (95%CI): 1.8 (1.6-2.0)], persisted for a longer time [3.4 (3.2-3.6)], manifested in more symptoms [3.8 (3.6-4.0)], caused more worry [4.2 (3.9-4.4)] and emotional distress [2.0 (1.8-2.2)], but was more manageable with medical treatment [3.1 (2.9-3.4)]. They perceived to a lesser extent that they had personal control [-2.2 (-2.4, -2.0)] and understanding [-0.3 (-0.5, -0.1)] regarding their condition. These negative perceptions were less pronounced in individuals with abdominal obesity. Behaviour/Lifestyle was attributed by 73% of participants to be the cause of their obesity. Stronger negative illness perceptions were associated with impaired HRQOL, particularly the physical component. CONCLUSION: Individuals with obesity perceived their conditions as threatening, and this seemed somewhat stronger in individuals with overall obesity than those with abdominal obesity. Behaviour/Lifestyle is a crucial target intervention and empowering self-management behaviour to achieve a healthy body weight may deliver promising results. In addition, strategies that aim to change negative perceptions of obesity into more adaptive ones may improve HRQOL.

Perceptions of Japanese and Dutch women with early breast cancer about monitoring their quality of life.

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Japanese women are more reluctant in expressing their problems with the illness, its treatment and patient-physician communication than Dutch women.

Psychosocial determinants of adherence with oral anticancer treatment: 'we don't need no education'.

INTRODUCTION: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

The partner's perspective of the impact of pituitary disease: Looking beyond the patient.

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.

Illness perceptions are associated with higher health care use in survivors of endometrial cancer-a study from the population-based PROFILES registry.

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.

Enhanced self-efficacy after a self-management programme in pituitary disease: a randomized controlled trial.

CONTEXT: Patients with pituitary disease report impairments in Quality of Life (QoL) despite optimal biomedical care. Until now, the effects of a self-management intervention (SMI) addressing psychological and social issues for these patients and their partners have not been studied. OBJECTIVE: To examine the effects of a SMI i.e. Patient and Partner Education Programme for Pituitary disease (PPEP-Pituitary). DESIGN AND SUBJECTS: A multicentre randomized controlled trial included 174 patients with pituitary disease, and 63 partners were allocated to either PPEP-Pituitary or a control group. PPEP-Pituitary included eight weekly sessions (90 min). Self-efficacy, bother and needs for support, illness perceptions, coping and QoL were assessed before the intervention (T0), directly after (T1) and after six months (T2). Mood was assessed before and after each session. RESULTS: Patients in PPEP-Pituitary reported improved mood after each session (except for session 1). In partners, mood only improved after the last three sessions. Patients reported higher self-efficacy at T1 (P = 0.016) which persisted up to T2 (P = 0.033), and less bother by mood problems directly after PPEP-Pituitary (P = 0.01), but more bother after six months (P = 0.001), although this increase was not different from baseline (P = 0.346). Partners in PPEP-Pituitary reported more vitality (P = 0.008) which persisted up to T2 (P = 0.034). At T2, partners also reported less anxiety and depressive symptoms (P ≤ 0.014). CONCLUSION: This first study evaluating the effects of a SMI targeting psychosocial issues in patients with pituitary disease and their partners demonstrated promising positive results. Future research should focus on the refinement and implementation of this SMI into clinical practice.

Maternal acceptability of pulse oximetry screening at home after home birth or very early discharge.

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.

Illness perceptions and coping determine quality of life in COPD patients.

BACKGROUND: A key goal of chronic obstructive pulmonary disease (COPD) care is to improve patients' quality of life (QoL). For outcomes such as QoL, illness perceptions and coping are important determinants. AIM: The primary aim was to assess the associations between illness perceptions, coping and QoL in COPD patients. A secondary aim was to compare illness perceptions and coping of patients with reference values derived from the literature. PATIENTS AND METHODS: A total of 100 patients were included in the study. Patients were asked to complete the Brief Illness Perception Questionnaire (B-IPQ), the Utrecht Proactive Coping Competence scale (UPCC), and a QoL item. Correlations and linear regression models were used to analyze the data. Student's t-tests were used to compare patients with COPD with reference values derived from the literature. RESULTS: Patients with better understanding of COPD utilized more proactive coping strategies (P=0.04). A more intense emotional response to COPD was related to less proactive coping (P=0.02). Patients who reported using more proactive coping techniques also reported to have a better QoL (P<0.01). Illness perceptions were also related to QoL: more positive illness perceptions were related to a better QoL (all P<0.05). Patients with COPD reported more negative illness perceptions than people with a common cold or patients with asthma (all P<0.01), but reported similar perceptions compared with patients with diabetes. CONCLUSION: Patients with COPD reported a moderate QoL, but appeared to be proficient in proactive coping. Illness perceptions, coping, and QoL were all associated with each other. Patients reported more strongly affected illness perceptions compared to people with a cold and patients with asthma. We postulate that a self-management intervention targeting patients' illness perceptions leads to improved QoL.

Is the MARS questionnaire a reliable measure of medication adherence in childhood asthma?

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.

Drawings of Blood Cells Reveal People's Perception of Their Blood Disorder: A Pilot Study.

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.

Illness perceptions are associated with mortality among 1552 colorectal cancer survivors: a study from the population-based PROFILES registry.

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.

Views on clinically suspect arthralgia: a focus group study.

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.

Coping styles and disability in patients with hand osteoarthritis.

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 ≥5) 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 joint-specific complaints as well as changing coping styles to improve functional outcome.

Xerosis and pruritus as major EGFRI-associated adverse events.

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.

Long-term adherence to inhaled corticosteroids in children with asthma: Observational study.

INTRODUCTION: Non-adherence to daily controller medication in childhood asthma is strongly dependent on potentially modifiable factors such as parental illness perceptions and medication beliefs. The extent to which adherence in children can be improved by addressing modifiable determinants of non-adherence has not been studied to date, however. We assessed long-term adherence and its determinants in children with asthma enrolled in a comprehensive asthma care program employing shared decision making with parents. METHODS: Observational study in 135 children 2-12 years of age with asthma attending a hospital-based outpatient clinic. One-year adherence to inhaled corticosteroids was measured by electronic devices. Parental illness perceptions and medication beliefs, and asthma control were assessed by validated questionnaires. RESULTS: Median (interquartile range) adherence was 84% (70-92%). 55 children (41%) did not achieve the pre-defined level of good adherence (≥80%) and this was associated with poorer asthma control. Parental perceived medication necessity was high, with a median (interquartile range) BMQ necessity score of 17 (16-20). Parents' replies to the five key questions on the core issues of the program showed high concordance of their illness perceptions and medication beliefs with the medical model of asthma and its treatment. Differences in these perceptions between adherent and non-adherent families were small and non-significant. CONCLUSIONS: Poor adherence may persist in children despite a high level of concordance between medical team and parents on illness perceptions and medication beliefs, even in the absence of socio-economic barriers to good adherence. Achieving good adherence in all children is a complex task, requiring interventions not covered in current guidelines of managing asthma in children.

More concerns and stronger beliefs about the necessity of medication in patients with acromegaly are associated with negative illness perceptions and impairment in quality of life.

OBJECTIVE: Patients with acromegaly can be treated with surgery, radiotherapy and/or medical treatment. In general, patients' beliefs about medication are associated with illness perceptions, a contributory factor of Quality of Life (QoL). At present, there are no quantitative studies on medication beliefs in patients with acromegaly. Here, we aimed to examine possible associations between medication beliefs, illness perceptions, and QoL. Furthermore we aimed to explore whether illness perceptions of patients with remission of acromegaly receiving medical treatment differ from patients without medical treatment. DESIGN: Cross-sectional evaluation of 73 patients with remission of acromegaly (n = 28 patients with medication, n = 45 without medication). The Beliefs about Medicines Questionnaire (BMQ), Illness Perception Questionnaire-Revised (IPQ-R), EuroQoL-5D, and AcroQoL were used for the assessment. RESULTS: Stronger beliefs about the necessity of medical treatment and stronger concerns about the adverse effects were associated with attributing more symptoms to acromegaly, perceiving more negative consequences, and having a stronger belief in a cyclical timeline (BMQ, all P < 0.05). Stronger beliefs about the necessity of medical treatment were associated with a worse disease-specific QoL (BMQ, P < 0.01). Patients with medical treatment perceived a more chronic timeline of their disease, compared to patients without medical treatment (IPQ-R, P = 0.002). CONCLUSION: Negative medication beliefs were related to more negative illness perceptions and worse disease-specific QoL. Patients receiving medical treatment for acromegaly tend to perceive a more chronic timeline of their disease, compared to patients with remission without medical treatment. These psychological factors need to be taken into account when treating patients and developing a psychosocial education program aiming to improve QoL.

The art of perception: Patients drawing their vestibular schwannoma.

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.

Persistent negative illness perceptions despite long-term biochemical control of acromegaly: novel application of the drawing test.

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: A cross-sectional study was conducted to evaluate the utility of the drawing test. METHODS: A total of 50 patients after long-term remission (mean±s.e.m., 16±1.2 years) of acromegaly were included in this study. 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 before 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 among 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.