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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., .

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., (© 2021. The Author(s), under exclusive licence to Springer Nature Limited.)

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.

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.

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.

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., (© The Author 2015. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oup.com.)

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.

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., (© 2015 The American Laryngological, Rhinological and Otological Society, Inc.)

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., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

Objective: The objective of this study was two-fold. First, to examine the levels of emotional intelligence in patients recently diagnosed with vestibular schwannoma, in comparison to those of healthy individuals and patients with other physical illness. Second, to evaluate the correlation between Emotional Intelligence and quality of life., Study Design: Cross sectional study in a university tertiary referral center., Methods: Consecutive patients (mean age [range], 56.4 [17-85] yr) diagnosed with vestibular schwannoma between April 2011 and October 2012 (N = 254). Sociodemographic characteristics, clinical characteristics, disease-specific quality of life (PANQOL), and Emotional Intelligence (TEIQue-SF) were assessed by questionnaire before the start of medical treatment., Results: Levels of Emotional Intelligence in patients with vestibular schwannoma (N = 178; response rate 70.1%) were significantly lower compared with healthy individuals and patients with cancer. Emotional Intelligence was highly positively correlated to disease-specific quality of life. Balance disorders and cranial nerve dysfunction made a significant negative contribution to the quality of life. For educational level, a significant positive contribution was found as well., Conclusion: The substantial impact of a vestibular schwannoma-diagnosis on a psychological measure (i.e., Emotional Intelligence) in the affected patients as demonstrated in our study has important clinical and research implications when developing guidelines about counselling of these patients. This also has to be taken into account when making clinical decisions about the proposed treatment. Addressing Emotional Intelligence may be helpful in the development of a self-management program for patients with vestibular schwannoma.

Background and Aims: Crohn's disease (CD) negatively impact patients' health-related quality of life (HRQOL). We used the common sense model to examine the contribution of illness perceptions and coping to HRQOL, in addition to clinical and socio-demographic characteristics. This provides insight into potential targets for psychological interventions aimed at improving HRQOL., Methods: Consecutive CD patients undergoing colonoscopy were included. Disease activity was assessed by a clinical and an endoscopic index. Patients completed questionnaires assessing illness perceptions (IPQ-R), coping (Utrecht Coping List), self-perceived health, neuroticism, and HRQOL. Hierarchical multiple regression analyses were performed to assess the contribution of illness perceptions and coping to HRQOL. Illness perceptions were compared to patients with rheumatoid arthritis, myocardial infarction (MI), and head and neck cancer (HNC)., Results: Of 82 CD patients, mean age was 42±14years. Clinical and endoscopic active disease was present in 42 (52%) and 49 (60%) patients, respectively. HRQOL was strongly impaired by clinical active disease (r=-0.79), self-perceived health (r=-0.60), and perceived consequences of CD (r=-0.54), but correlated poorly with endoscopic disease activity (r=-0.29). Illness perceptions significantly contributed 3-27% to HRQOL. Coping had no contributory role. CD patients perceived similarly strong consequences of their illness as patients with MI and HNC and had the strongest thoughts about the chronic nature of their illness., Conclusions: CD has a similar impact on patients' daily lives as was observed in patients with MI and HNC. Illness perceptions contribute to HRQOL and should therefore be incorporated in clinical practice, thereby improving HRQOL., (Copyright © 2012 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved.)

Objective: To examine the validity of the Penn Acoustic Neuroma Quality-of-Life Scale (PANQOL) in a sample of Dutch patients recently diagnosed with vestibular schwannoma., Study Design and Setting: Cross-sectional study in a university tertiary referral center., Methods: Between April 2011 and March 2012 consecutive patients (mean age, 56.4; range, 17-85 yr) diagnosed with vestibular schwannoma (n = 155) were included. The PANQOL was translated into Dutch according to the accepted rules of forward-backward translation. Quality of life at diagnosis was measured with the generic SF-36 and the disease-specific PANQOL. Factor analysis was used to explore the factor structure of the PANQOL. The scores of the patients in the current study were compared with those of patients from the United States of America. Correlations between SF-36 and PANQOL were examined to study psychometric characteristics of the PANQOL., Results: One hundred nineteen patients (76.8%) completed the questionnaires. SF-36 scores are comparable to previously published studies measuring Quality of Life at diagnosis. Factor analysis on our data has confirmed the original 7-dimensional structure of the PANQOL. The PANQOL scores from the Dutch and the USA patients are comparable. Correlations between PANQOL and SF-36 dimensions corroborate the validity of the Dutch PANQOL version., Conclusion: Vestibular schwannoma patients experience a reduced quality of life immediately after the diagnostic process. The PANQOL seems to be a valid disease-specific measure of quality of life in Dutch patients who have recently been diagnosed with vestibular schwannoma.

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.

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.

Context and Objective: Illness perceptions pertain to the beliefs patients develop about their illness, and these views are determinants of behavior directed at the illness. Illness perceptions are determinants of quality of life (QoL). QoL remains impaired in patients with biochemical control of acromegaly, but illness perceptions were never studied in these patients., Aim: The aim of the current study was to explore illness perceptions and their association with QoL in patients with long-term biochemical control of acromegaly., Design: This was a cross-sectional study., Subjects: We included patients with long-term biochemical control of acromegaly (n = 81), and compared them with Dutch reference populations: patients with acute pain (n=35) or chronic pain (n = 63), Cushing's syndrome (n = 52), chronic obstructive pulmonary disease (n = 171), and vestibular schwannoma (n = 80). Illness perceptions were evaluated using the Illness Perception Questionnaire Revised, and QoL was assessed with the Physical Symptoms Checklist, EuroQoL-5D, and AcroQoL., Results: Illness perceptions showed strong correlations with QoL. Patients after remission of acromegaly have a good understanding of their disease, but they experience a lack of personal control and are not likely to seek medical care compared with patients with acute disease (all P < 0.01)., Conclusion: Illness perceptions of patients after long-term remission of acromegaly are affected and strongly related to QoL. Patients reported more negative illness perceptions than patients with acute illness but more positive illness perceptions than patients with chronic diseases. Additional research is necessary to assess whether a self-management intervention might help in improving affected illness perceptions and thereby improve QoL.

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.

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.

Objective: To determine the natural history and long-term quality-of-life (QOL) outcome after conservative treatment for vestibular schwannoma., Study Design: Prospective study conducted in a university-based tertiary referral center., Patients: A total of 70 vestibular schwannoma patients who were initially included in the wait and scan protocol between January 2002 and December 2003 were followed with a mean observation time of 43 months. All patients had small- or medium-sized tumors when they were included in the protocol. QOL was measured at diagnosis and at the end of follow-up in those patients who were still conservatively treated using the Short Form 36 Health Survey (SF-36). The study group was characterized by nongrowing small tumors and relatively stable symptoms over time., Main Outcome Measures: Clinical, audiometric, radiologic, and QOL results., Results: In 44 patients (63%), growth of the tumor was not observed, and 25 (36%) tumors did grow. Of the 70 included patients, 27 patients (39%) required treatment. Forty-one patients (59%) were still conservatively treated at the end of follow-up (mean 47 +/- 16 mo). Hearing was preserved in 16 (57%) of the 28 patients with useful hearing at diagnosis. At the end of follow-up, SF-36 scores were only slightly deteriorated for almost all subscales when compared with scores at diagnosis; however, differences were statistically not significant (p > 0.05). There was no significant correlation between the presence of cochleovestibular symptoms and QOL scores (p > 0.05)., Conclusion: Conservative observation of small vestibular schwannomas may be regarded as a reasonable management option because most of these tumors do not grow during an initial period of observation. Conservative treatment of this subset of patients with small, nongrowing tumors does not significantly affect life functioning, as reflected in SF-36 survey data. However, hearing loss did progress in this population. Thus, patients should be counseled regarding this risk and generic QOL measures such as the SF-36 should be used with caution in future assessments. This study emphasizes the importance of combining generic and disease-specific QOL measures in future studies of protocols of vestibular schwannoma management.

Objective: To evaluate illness perceptions, coping behavior, and quality of life (QOL) in patients with vestibular schwannoma (VS) at diagnosis., Study Design: Prospective patient analysis., Setting: University Teaching Hospital, tertiary care clinic., Patients: Consecutive patients with VS (n = 80) completed a set of questionnaires at diagnosis to assess psychological characteristics and QOL., Intervention: Diagnostic and rehabilitative., Main Outcome Measures: Psychological characteristics and QOL, measured via questionnaires focusing on illness perceptions (Illness Perception Questionnaire Revised), coping (Utrecht Coping List), and QOL (Medical Outcomes Study 36-Item Short Form Health Survey), were compared with normative data for the general Dutch population and to data concerning patients with other illnesses., Results: The 36-Item Short Form Health Survey scores of VS patients at diagnosis were significantly decreased when compared with healthy controls, patients with head and neck cancer, benign prostate hypertrophy, chronic obstructive pulmonary disease, and deaf patients. Scores for illness perceptions were in between those of patients with acute pain and chronic pain for most subscales except illness identity, emotional representations, and illness coherence. In their coping behavior, VS patients scored lower on the subscale active coping, sought less social support, and expressed their emotions less, but also showed less passive coping compared with reference values., Conclusion: Vestibular schwannoma patients experience impaired QOL compared with healthy controls and reference groups. Their illness perceptions are in between those of patients with acute and chronic pain, and their coping behavior is less active in general. This may have implications for clinical decision making and for optimizing interaction with patients. Changing illness perceptions and coping by means of an intervention and encouraging social support by means of patient support groups may improve QOL in VS patients.

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., ((c) 2007 John Wiley & Sons, Ltd.)

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.

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.

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., ((c) 2005 Wiley Periodicals, Inc.)

ContextSickle 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.ObjectiveWe 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.MethodWe 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).ResultsParticipants 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

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]

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]

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]