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Background: Patients report persisting impairment in quality of life (QoL) after treatment for pituitary disease. At present, there is no questionnaire to assess (a) whether patients with pituitary disease are bothered by these consequences, and (b) their needs for support., Objective: To develop and validate a disease-specific questionnaire for patients with pituitary disease which incorporates patient perceived bother related to the consequences of the disease, and their needs for support., Methods: Items for the Leiden Bother and Needs Questionnaire for patients with pituitary disease (LBNQ-Pituitary) were formulated based on results of a recent focus group study (n = 49 items). 337 patients completed the LBNQ-Pituitary and six validated QoL questionnaires (EuroQoL-5D, SF-36, MFI-20, HADS, AcroQol, CushingQoL). Construct validity was examined by exploratory factor analysis. Reliabilities of the subscales were calculated with Cronbach's alphas, and concurrent validity was assessed by calculating Spearman's correlations between the LBNQ-Pituitary and the other measures., Results: Factor analyses produced five subscales (i.e., mood problems, negative illness perceptions, issues in sexual functioning, physical and cognitive complaints, issues in social functioning) containing a total of 26 items. All factors were found to be reliable (Cronbach's alphas all ≥.765), and the correlations between the dimensions of the LBNQ-Pituitary and other questionnaires (all P ≤ .0001) demonstrated convergent validity., Conclusions: The LBNQ-Pituitary can be used to assess the degree to which patients are bothered by the consequences of the pituitary disease, as well as their needs for support. It could also facilitate an efficient assessment of patients' needs for support in clinical practice. We postulate that paying attention to needs for support will lead to optimal patient care (e.g., improvement in psychosocial care), and positively affect QoL.

Background and Aims: Non-adherence to anti-tumour necrosis factor [TNF] agents in patients with inflammatory bowel disease [IBD] is a serious problem. In this study, we assessed risk factors for non-adherence and examined the association between adherence to anti-TNF agents and loss of response [LOR]., Methods: In this multicentre, 12-month observational study, outpatients with IBD were included. Demographic and clinical characteristics were recorded. Adherence was measured with the Modified Morisky Adherence Scale-8 [MMAS-8] and 12-month pharmacy refills [medication possession ratio, MPR]. Risk factors included demographic and clinical characteristics, medication beliefs, and illness perceptions. Cox regression analysis was performed to determine the association between MPR and LOR to anti-TNF, IBD-related surgery or hospitalisation, dose intensification, or discontinuation of anti-TNF., Results: In total, 128 patients were included [67 infliximab, 61 adalimumab], mean age 37 ( ± standard deviation [SD] 14) years, 71 [56%] female. Median disease duration was 8 (interquartile range [IQR] 4-14) years. Clinical disease activity was present in 41/128 [32%] patients, 36/127 [28%] patients had an MMAS-8 < 6 ['low adherence'], and 25/99 [25%] patients had an MPR < 80% [non-adherence]. Risk factors for non-adherence included adalimumab use (odds ratio [OR] 10.1, 95% confidence interval [CI] 2.62-40.00), stronger emotional response [OR 1.16, 95% CI 1.02-1.31], and shorter timeline perception, i.e. short perceived illness duration [OR 0.60, 95% CI 0.38-0.96]. Adherence is linearly and negatively [OR 0.14, 95% CI 0.03-0.63] associated with LOR., Conclusion: Non-adherence to anti-TNF agents is strongly associated with LOR to anti-TNF agents, adalimumab use, and illness perceptions. The latter may provide an important target for interventions aimed at improving adherence and health outcomes., (Copyright © 2016 European Crohn’s and Colitis Organisation (ECCO). Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

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.

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.

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.

Background: Responses to diagnosis and treatment of cancer are mediated by a patient's illness perceptions. Such perceptions, though different among individuals, may be culturally dependent, and act upon health related quality of life (HRQOL). Over time, individual patients show different types of response trajectories. Four issues were investigated: (I) country and disease differences in illness beliefs between Japanese and Dutch patients with lung or breast cancer; (II) country and disease differences in HRQOL in early chemotherapy; (III) individual, country, and disease differences among HRQOL trajectories; (IV) the impact of illness beliefs on HRQOL trajectories., Methods: A total of 89 Japanese and Dutch patients with lung or breast cancer cooperated immediately before, one week after, and eight weeks after the start of chemotherapy. Data included the EORTC QLQ-C30 quality of life (QL) questionnaire and the Brief Illness Perception Questionnaire (B-IPQ). EORTC QLQ-C30 scales were summarized by two dimensions: generalized quality of life (GENQOL) and psychological well-being (PSYQOL)., Results: (I) Japanese patients had higher means on B-IPQ's concern and time line than Dutch patients. Japanese lung cancer patients had a higher mean on treatment control than all other patients; (II) no differences between country and cancer type occurred on the two HRQOL dimensions. First assessment HRQOL differed significantly from the second and third assessments without differences between the latter two. Between the first two assessments, a decrease in GENQOL occurred, together with an improvement in PSYQOL; (III) individual differences dominated the trajectories; (IV) negative beliefs usually coincided with lower scores on GENQOL and PSYQOL. Patients initially lower on PSYQOL generally showed larger improvement., Conclusions: Individual differences in HRQOL dominate differences between culture and cancer type, and illness beliefs influence HRQOL changes in individual patients. Clinical application is possible through influencing the patient's illness beliefs to create an optimal starting position for chemotherapy.

Non-adherence occurs at any age, in all chronic diseases, and has a major impact on clinical outcomes. Non-adherence is primarily determined by perceptions of illness and medication beliefs. During puberty, adolescents attain independence from their parents and attach to their peers. This complicates successful self-management of chronic illness, because the adolescents avoid standing out from their peers. Discussion of barriers hindering successful self-management in adolescents can be promoted by seeing the patient alone, without the parents being present, and by acknowledging the patient's independence and responsibilities.

This study reviews empirical studies in the area of illness perceptions in patients with non-small-cell lung cancer (NSCLC). Beliefs about the illness and its consequences, including its medical management, are part of the review. Also, the relatively small research area of perceptions and views about patients with NSCLC of caregivers and health care providers is reviewed. Given our earlier review of the topic in this Journal [5], we now report on papers published after that 2011 publication. 38 papers were identified, a quite major increase in published research compared to the 15 papers in our previous publication (2011 and earlier). Most papers report on psychosocial concepts that determine responses to the illness and its treatment. Increasingly, reactions of caregivers and health care providers are studied. These last two categories of respondents perceive the psychosocial consequences of NSCLC as more severe than the patients themselves. Psychosocial variables appear to be stronger predictors of psychological distress and reduced quality of life than sociodemographic or clinical variables. These results are instrumental in the developing field of psychosocial interventions for patients with non-small-cell lung cancer and their caregivers, which may also be helpful for health care providers. Suggestions for research and clinical implications are presented., (Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.)

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.)

Purpose: Pituitary adenomas give rise to physical and psychological symptoms, which may persist after biochemical cure. Growing attention has been paid to quality of life (QoL) in these patients. We aimed to systematically analyze QoL assessment methods and QoL outcome in these patients., Methods: We conducted a systematic literature search up to January 2014 in PubMed, Web of Knowledge, PsycInfo and EMBASE., Results: 102 papers assessing QoL in patients with a pituitary adenoma were included. In clinical (original) studies in which QoL was the primary outcome parameter (n = 54), 19 studies combined a generic questionnaire with a disease-specific questionnaire. QoL was found to be impaired in patients with active disease relative to controls, and generally improved during biochemical cure. However, no normalization occurred, with patients with remitted Cushing's disease demonstrating the smallest improvement. Somatic factors (e.g., hypopituitarism, sleep characteristics), psychological factors (illness perceptions) and health care environment (rural vs. urban) were identified as influencing factors. Intervention studies (predominantly evaluating medical interventions) have been found to improve QoL., Conclusions: The growing number of studies assessing QoL generally described the negative impact of pituitary adenomas. QoL research in this patient group could be further elaborated by the development of disease-specific questionnaires for prolactinoma and non-functioning adenoma, consequent use of generic and disease-specific questionnaires and using a long-term (longitudinal) follow-up. Surgical and pharmacological interventions improve but not normalize QoL. We postulate that there might be margin for further improvement of QoL, for instance by using psychosocial interventions, in addition to optimal medical treatment.

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.)

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

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., (© 2015 European Society of Endocrinology.)

Living with SLE is a major task for the patients and their social environment. In modern health care, quality of life is increasingly incorporated as an important outcome. Studying novels about illness is a new method of exploring quality of life in patients with an illness. In this paper, we use the novel A tribe of women by Hervé Bazin as data to explore how a patient with SLE gives meaning to her illness and how her social environment reacts toward the illness and its treatment. We find that the novel-probably the only one where SLE is a major subject-offers a rich set of data on "living with SLE". Our findings may be instrumental in encouraging health care providers to explore quality of life in patients with SLE, incorporating self-management in order to improve their quality of life, and in teaching medical students about "medical humanities".

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., (© 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Background and Aims: Back and joint pain are the most common extraintestinal symptoms reported by patients with inflammatory bowel disease (IBD). We assessed the impact of back/joint pain, illness perceptions, and coping on quality of life (QOL) and work productivity in patients with IBD., Methods: Our cohort included 155 IBD patients with and 100 without arthropathy. Arthropathy was defined as daily back pain for ≥3 months and/or peripheral joint pain and/or joint swelling over the last year. At baseline and at 12 months, patients completed questionnaires on the extent of back/joint pain, IBD disease activity, illness perceptions, coping, QOL, and work productivity. The impact of back/joint pain, illness perceptions and coping on QOL and work productivity was determined, using linear mixed models., Results: In total, 204 IBD patients (72% Crohn's disease, 40% male, mean age 44 ± 14 years) completed questionnaires at both time points. At both time points, IBD patients with back/joint pain reported a significantly lower QOL and work productivity compared with IBD patients without back/joint pain. Predictors of low QOL were back/joint pain (β = -1.04, 95% confidence interval [CI] -1.40, -0.68), stronger beliefs about the illness consequences (β = -0.39, 95% CI -0.59, -0.18) and emotional impact of IBD (β = -0.47, 95% CI -0.66, -0.28), and the coping strategy 'decreasing activity' (β = -0.26, 95% CI -0.48, -0.03). Predictors of work productivity were back/joint pain (β = 0.22, 95% CI 0.07, 0.37) and illness consequences (β = 0.14, 95% CI 0.06, 0.22)., Conclusion: Back/joint pain, illness perceptions, and coping are significant predictors of QOL and work productivity, after controlling for disease activity., (Copyright © 2015 European Crohn’s and Colitis Organisation (ECCO). Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

The nature and severity of respiratory disease are typically expressed with biomedical measures such as pulmonary function, X-rays, blood tests, and other physiological characteristics. The impact of respiratory illness on the sufferer, however, is reflected in the stories patients tell: to themselves, their social environment, and their health care providers. Behavioral research often applies standardized questionnaires to assess this subjective impact. Additional approaches to sampling patients' experience of respiratory illness may, however, provide important and clinically useful information that is not captured by other methods. Herein, we assert that novels, poems, movies, music, and paintings may represent a rich, experiential understanding of the patient's point of view of asthma, cystic fibrosis, lung cancer, and tuberculosis. Examination of these works illustrates the broad range and major impact of respiratory illness on patients' quality of life. We suggest that examining how illness is represented in various art forms may help patients, their social environment, and their health care providers in coping with the illness and in humanizing medical care. Medical students' clinical skills may benefit when illness experiences as expressed in art are incorporated in the medical curriculum. More generally, Narrative Health Psychology, Narrative Medicine, and Medical Humanities deserve more attention in education, training, and clinical care of (respiratory) physicians, medical students, and other health care professionals., (© The Author(s) 2015.)

Purpose: Patients treated for pituitary adenomas generally report a reduced quality of life (QoL). At present, the patient's perspective of QoL has not been fully addressed and this, and further insight in potential determinants of QoL in pituitary diseases is required to design strategies to improve QoL. We aimed to define patients' perceived QoL and to identify potential factors they perceive to contribute to QoL., Methods: We conducted four independent focus groups of six patients each, per specific pituitary disease (Cushing's disease, Non-functioning pituitary macroadenoma, acromegaly, prolactinoma). In two sessions these focus groups discussed aspects of QoL. Verbatim transcripts were analyzed using a grounded theory approach., Results: The issues raised by the patient groups were compatible with statements and items of available QoL questionnaires. In addition, other QoL aspects emerged, such as visual limitations (physical problems); issues with a desire to have children/family planning, fear of collapsing, fear of recurrence, panic, persisting thoughts, problems with an altered personality, anger, jealousy, sadness, frustration (psychological problems); and difficulties communicating about the disease, lack of sympathy and understanding by others, and a reduced social network (social problems). Next, this study uncovered factors which might contribute to a decreased QoL (e.g. less effective coping strategies, negative illness perceptions, negative beliefs about medicines, unmet needs regarding care)., Conclusions: This focus group study demonstrated that important disease-specific aspects of QoL are neglected in current pituitary disease-specific questionnaires and elucidated potential factors that contribute to a decreased QoL. Information provided in this study can (and will) be used for developing additional items for disease-specific QoL questionnaires and for the development of a self-management intervention aiming to improve QoL in patients treated for pituitary diseases.

Background: The inflammatory bowel disease (IBD) disability index has recently been introduced to measure patients' physical, psychological, familial, and social limitations associated with IBD. We assessed factors related to self-reported disability and the relationship between disability and direct health care costs., Methods: A large cohort of patients with Crohn's disease (CD) and ulcerative colitis (UC) was prospectively followed for 2 years by 3 monthly web-based questionnaires. At 2 years, patients completed the IBD disability index, with lower score indicating more disability. Linear regression analysis was used to examine the impact of demographics, clinical characteristics, and illness perceptions on self-reported disability. Trends in direct health care costs across the disability severity groups minimal, mild, moderate, and severe, were tested., Results: A total of 554 patients with CD and 424 patients with UC completed the IBD disability index (response rate, 45%). Both clinical characteristics and illness perceptions significantly contributed to self-reported disability (45%-47%, P = 0.000 and 8%-12%, P = 0.000, respectively). Patients with CD scored lower on the self-reported IBD disability index than patients with UC (0.255 versus 3.890, P < 0.000), indicating more disability in patients with CD. Factors independently associated with higher self-reported disability rates were increased disease activity, illness identity (higher number of symptoms attributed to IBD), and stronger emotional response. Disease duration and disease phenotype were not associated with self-reported disability. Direct health care costs increased with the worsening of self-reported disability (P = 0.000)., Conclusions: More disability was reported by patients with CD than by UC. Self-reported disability in IBD was mainly determined by clinical disease activity and illness perceptions but not by disease duration or disease phenotype.

Women with breast cancer respond to the illness and its medical management in their own personal way. Their coping behavior and self-management are determined by their views (cognitions) and feelings (emotions) about symptoms and illness: their illness perceptions. This paper reports the results of a systematic literature review of illness perceptions and breast cancer. In the 12 studies identified, published between 2012 and 2015, illness perceptions were found to be important concomitants of medical and behavioral outcomes: fear of recurrence, distress, quality of life, satisfaction with medical care, use of traditional healers, and risk perception. Intervention studies are called for where the effects are examined of replacing unhelpful illness perceptions by more constructive ones. Health care providers do well by incorporating illness perceptions in their care for women with breast cancer, as this is instrumental in improving patients' quality of life.

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.

Background: Strategies are needed to help general practitioners (GPs) promote smoking cessation as recommended by guidelines. This study examines whether the quality of action planning among GPs improves their provision of smoking cessation care., Methods: The effectiveness of a 1-h training programme was examined in a cluster randomised controlled trial in which 49 GPs participated. GPs who followed the training (intervention group; n = 25) formulated action plans related to i) enquiring about smoking, ii) advising to quit smoking, and iii) arranging follow-up for smokers motivated to quit. GPs also formulated a coping plan for encountering smokers not motivated to quit. The quality of these plans (plan specificity) was rated and, 6 weeks after the training, GPs reported on the performance of these plans (plan enactment). Multilevel regression analyses were used to examine the effects of plan specificity and plan enactment on patient-reported smoking cessation activities of the GPs in the intervention group (n = 1,632 patients) compared with the control group (n = 1,769 patients)., Results: Compared to the control group, GPs who formulated a highly specific action plan during the training asked their patients about smoking more often after the training compared to prior to the training (OR 2.11, 95% CI 1.51-2.95). GPs were most likely to have asked patients about smoking after the training compared to prior to the training when they had enacted a highly specific formulated action plan (OR 3.08, 95% CI 2.04-4.64). The effects of GP plan specificity and plan enactment on asking patient about smoking were most prominent among GPs who, at baseline, intended to provide smoking cessation care., Conclusions: A highly specific action plan formulated by a GP on when, how, and by whom patients will be asked about smoking had a positive effect on GPs' asking patients about smoking, especially when these professionals also reported to have enacted this plan. This effect was most prominent among GPs who intended to provide smoking cessation care prior to the intervention. Training in devising personalised coping plans is recommended to further increase GPs' provision of advice to quit smoking and arranging follow-up support to quit smoking.

Objective: To examine the extent to which smokers express negative statements about quitting and the extent to which these statements influence general practitioners' (GPs') and practice nurses' (PNs') (dis)continuation of guideline-recommended smoking cessation care., Methods: Fifty-two video-consultations were observed (GP-consultations: 2007-2008; PN-consultations: 2010-2011). Dialogues were transcribed verbatim and professionals' and patients' speech units were coded and analysed using sequential analyses (n=1424 speech units)., Results: GPs focused on asking about smoking (GPs: 42.4% versus PNs: 26.2%, p=0.011) and advising them to quit (GPs: 15.3% versus PNs: 3.5%, p<0.001), whereas PNs focused on assisting them with quitting (GPs: 25.4% versus PNs: 55.2%, p<0.001). Overall, patients expressed more negative statements about quitting than positive statements (negative: 25.3% versus positive: 11.9%, p<0.001), especially when PNs assessed their willingness to quit (OR 3.61, 95% CI 1.44-9.01) or assisted them with quitting (OR 2.23, 95% CI 1.43-3.48)., Practice Implications: An alternative approach to smoking cessation care is proposed in which GPs' tasks are limited to asking, advising, and arranging follow-up. This approach seems the least likely to evoke negative statements of patients about quitting during dialogues with GPs and is compatible with the tasks and skills of PNs who could, subsequently, assist smokers with quitting., (Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.)

Background: Despite evidence that the blood-saving measures (BSMs) erythropoietin (EPO) and intra- and postoperative blood salvage are not (cost-)effective in primary elective total hip and knee arthroplasties, they are used frequently in Dutch hospitals. This study aims to assess the impact of barriers associated with the intention of physicians to stop BSMs., Study Design and Methods: A survey among 400 orthopedic surgeons and 400 anesthesiologists within the Netherlands was performed. Multivariate logistic regression was used to identify barriers associated with intention to stop BSMs., Results: A total of 153 (40%) orthopedic surgeons and 100 (27%) anesthesiologists responded. Of all responders 67% used EPO, perioperative blood salvage, or a combination. After reading the evidence on non-cost-effective BSMs, 50% of respondents intended to stop EPO and 53% to stop perioperative blood salvage. In general, barriers perceived most frequently were lack of attention for blood management (90% of respondents), department priority to prevent transfusions (88%), and patient characteristics such as comorbidity (81%). Barriers significantly associated with intention to stop EPO were lack of interest to save money and the impact of other involved parties. Barriers significantly associated with intention to stop perioperative blood salvage were concerns about patient safety, lack of alternatives, losing experience with the technique, and lack of interest to save money., Conclusion: Physicians experience barriers to stop using BSMs, related to their own technical skills, patient safety, current blood management policy, and lack of interest to save money. These barriers should be targeted in strategies to make BSM use cost-effective., (© 2014 AABB.)

Context: Patients with adrenal insufficiency (AI) require daily and life-long hydrocortisone substitution with risks of under- and overreplacement, the necessity to adjust the dose in stressful situations, and a lack of clinical and biochemical parameters to assess optimal dosing. The spectrum of medication beliefs in patients with AI is currently unknown., Objective: The objective of the study was to examine the possible association between illness perceptions and medication beliefs about hydrocortisone (HC) in patients with AI., Design and Subjects: This was a cross-sectional evaluation of illness perceptions and medication beliefs in 107 patients with primary AI (n = 49), secondary AI after the treatment of Cushing's syndrome (n = 29), or treatment of nonfunctioning pituitary adenoma (n = 29). The Illness Perception Questionnaire-Revised and the Beliefs about Medicines Questionnaire were used for the assessment., Results: Stronger beliefs about the necessity of HC and stronger concerns about the adverse effects of HC were associated with attribution of more symptoms to AI, to the perception of AI being more cyclical, to the perception of more negative consequences of AI, and to the presence of stronger emotional representations (all P < .05). Furthermore, stronger beliefs about the necessity of HC intake were associated with feelings of less personal control over AI (P < .05). Stronger concerns about the adverse effects of HC were associated with lower perceived treatment control and lower illness coherence (both P < .05). In addition, patients with Cushing's syndrome reported stronger beliefs regarding the necessity of taking HC, compared with patients with Addison's disease (P = .039) or nonfunctioning pituitary adenoma (P < .001)., Conclusion: Specific beliefs about the necessity of hydrocortisone replacement and concerns about its adverse effects were strongly associated with more negative illness perceptions. These specific beliefs differed, depending on the etiology of AI. These results need to be taken into account in the treatment of patients with AI and may serve to enable the development of psychosocial education/self-management programs aiming at improving quality of life.

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.

The purpose of this study was to investigate whether effects of various types of support on dialysis patients' perceived autonomy and self-esteem depend on patients' perceived concerns and personal control regarding their illness. One hundred sixty-six patients completed written questionnaires. Main and interaction effects of support, concern, and personal control on autonomy and self-esteem were examined using linear regression analyses. General emotional support was positively related to autonomy in highly concerned patients (p < .05). Overprotection was negatively associated with autonomy (p < .05), and this association was stronger in patients with high perceived personal control (p < .01). A positive main effect of general emotional support (p < .05) and a negative main effect of overprotection (p < .01) on self-esteem were observed. The role of support in dialysis patients' autonomy appears to depend on patients' illness perceptions, whereas the role of support in patients' self-esteem does not. These findings suggest that dialysis patients' personal views about their illness can provide insight into whether patients could benefit from support, and that the provision of support should be tailored to patients' individual needs.

Context: A high prevalence of psychological morbidity and maladaptive personality as well as impaired quality of life (QoL) is observed in patients with and without hydrocortisone dependency following (cured) Cushing's syndrome. However, it is currently unclear whether a similar pattern is present in patients with chronic glucocorticoid replacement for primary adrenal insufficiency (PAI)., Objective: To evaluate psychological functioning, personality traits, and QoL in patients with PAI., Design and Subjects: A cross-sectional study including 54 patients with stable treatment for PAI and 54 healthy matched controls. Both patients and controls completed questionnaires on psychological functioning (Apathy Scale, Irritability Scale, Mood and Anxiety Symptoms Questionnaire short form, and Hospital Anxiety and Depression Scale), personality traits (Dimensional Assessment of Personality Pathology short form), and QoL (Multidimensional Fatigue Inventory, Short Form 36, EuroQoL-5D, Nottingham Health Profile, and Physical Symptom Checklist)., Results: Patients with PAI suffered from more psychological morbidity (i.e. irritability and somatic arousal) and QoL impairments compared with controls (all P<0.01). There were no differences regarding maladaptive personality traits between patients and controls. However, there was a strong and consistent positive association between the daily hydrocortisone dose and prevalence of maladaptive personality traits (i.e. identity problems, cognitive distortion, compulsivity, restricted expression, callousness, oppositionality, rejection, conduct problems, social avoidance, narcissism, and insecure attachment, all P<0.05). There was also a strong relation between the mean daily hydrocortisone dose and both psychological morbidity (i.e. depression, P<0.05) and QoL impairments (i.e. general health perception, several measures of physical functioning, and vitality, all P<0.05)., Conclusion: Patients on stable glucocorticoid replacement therapy for PAI report psychological morbidity and impaired QoL. Psychological morbidity, impaired QoL, and maladaptive personality traits were all associated with higher dosages of hydrocortisone., (© 2014 European Society of Endocrinology.)

Background: Despite evidence that erythropoietin and intra- and postoperative blood salvage are expensive techniques considered to be non-cost-effective in primary elective total hip and knee arthroplasties in the Netherlands, Dutch medical professionals use them frequently to prevent the need for allogeneic transfusion. To actually change physicians' practice, a tailored strategy aimed at barriers that hinder physicians in abandoning the use of erythropoietin and perioperative blood salvage was systematically developed. The study aims to examine the effectiveness, feasibility and costs of this tailored de-implementation strategy compared to a control strategy., Methods/design: A cluster randomized controlled trial including an effect, process and economic evaluation will be conducted in a minimum of 20 Dutch hospitals. Randomisation takes place at hospital level. The hospitals in the intervention group will receive a tailored de-implementation strategy that consists of four components: interactive education, feedback in educational outreach visits, electronically sent reports on hospital performance (all aimed at orthopedic surgeons and anesthesiologists), and information letters or emails aimed at other involved professionals within the intervention hospital (transfusion committee, OR-personnel, pharmacists). The hospitals in the control group will receive a control strategy (i.e., passive dissemination of available evidence). Outcomes will be measured at patient level, using retrospective medical record review. This will be done in all hospitals at baseline and after completion of the intervention period. The primary outcome of the effect evaluation is the percentage of patients undergoing primary elective total hip or knee arthroplasty in which erythropoietin or perioperative blood salvage is applied. The actual exposure to the tailored strategy and users' experiences will be assessed in the process evaluation. In the economic evaluation, the costs of the tailored strategy and the control strategy in relation to the difference in their effectiveness will be compared., Discussion: This study will show whether a systematically developed tailored strategy is more effective for de-implementation of non-cost-effective blood saving measures than the control strategy. This knowledge can be used in national and international initiatives to make healthcare more efficient. It also provides more generalized knowledge regarding de-implementation strategies., Trial Registration: This trial is registered at the Dutch Trial Register NTR4044.

Succinate dehydrogenase (SDH) mutation carriers are predisposed for developing paragangliomas. This study aimed to explore illness perceptions, risk perception and disease-related worry in these individuals. All consecutive SDHB and SDHD mutation carriers followed at the Department of Endocrinology of the Leiden University Medical Center (LUMC), a tertiary referral center, were eligible for inclusion. Illness perceptions were assessed using the validated Illness Perception Questionnaire-Revised and compared to reference populations. Risk perception and worry were measured by two items each and associations with illness perceptions explored. Twenty SDHB and 118 SDHD mutation carriers responded. Compared with various reference groups, SDH mutation carriers perceived less controllability of their condition. SDHB mutation carriers considered their condition to be less chronic in nature (p = 0.005) and perceived more personal (p = 0.018) and treatment control (p = 0.001) than SDHD mutation carriers. Mutation carriers with manifest disease reported more negative illness perceptions and a higher risk perception of developing subsequent tumors than asymptomatic mutation carriers. Illness perceptions, risk perception and disease-related worry were strongly correlated. Risk perception and disease-related worry may be assessed through illness perceptions. The development of interventions targeting illness perceptions may provide tools for genetic counseling.

Although guideline-based asthma care and adherence to inhaled corticosteroids are predictors of asthma control, the role of adherence in maintaining long-term asthma control is largely unknown. This study was designed to explore the relationship between adherence to inhaled corticosteroids and long-term asthma control in young children with asthma. In this observational study, 81 2-6-year-old asthmatic children, using inhaled corticosteroids, closely followed-up in a programme with extensive self-management training, were enrolled. Adherence was measured daily for 12 months using Smartinhaler (Nexus6 Ltd, Auckland, New Zealand) devices. Long-term asthma control was assessed by parents and physicians and included clinical assessment, an asthma control questionnaire and lung function measurement. We examined the association of adherence to asthma control, adjusting for seasonal influences and clinical characteristics. Median (interquartile range) adherence was 87% (70-94%), and 64 (79%) children had well-controlled asthma throughout follow-up. Adherence >80% was associated with better asthma control, and we found no important confounders of this association. Children with persistent mild symptoms had lower adherence rates (p=0.028). Guideline-based asthma care was associated with good asthma control in most children. Adherence to inhaled corticosteroids was an independent strong predictor of long-term asthma control, with highest levels of asthma control found in children with adherence >80% of doses prescribed.

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.

Background and Aims: Understanding the determinants of Crohn's disease (CD) patients' health-related quality of life (HRQOL) may facilitate interventions that improve HRQOL. Therefore, we systematically assessed determinants of HRQOL in adult CD patients., Methods: The databases PubMed, EMBASE, the Cochrane Library, PsycINFO and CINAHL were searched for English abstracts, related to socio-demographic, psychological, clinical and treatment-related determinants of HRQOL in CD disease. Two independent reviewers extracted study characteristics and assessed the methodological quality according the criteria of Hayden et al. The main outcome was the number of studies showing a statistically significant association between the above-mentioned determinants and HRQOL. A meta-analysis was performed to quantify the relationship between disease activity and HRQOL., Results: Of the 2060 articles identified, 29 eligible studies were included. The majority of studies were cross-sectional and had a moderate to high quality. Data on psychological determinants were scarce. Work disability, increased disease activity, number of relapses, corticosteroid treatment and hospitalization rate were significantly associated with a lower HRQOL in the majority of included studies. Biological treatment positively influenced HRQOL. The pooled data on the association between disease activity and HRQOL resulted in a weighed mean correlation coefficient of -0.61 (CI -0.65 to -0.57)., Conclusions: HRQOL of adult CD patients is consistently determined by markers of active disease, including work disability, increased disease activity, number of relapses, biological treatment and hospitalization rate. As disease activity contributed to only 37% of HRQOL, there remains a need for additional, possibly modifiable, determinants. These determinants may refine possibilities to improve HRQOL., (Copyright © 2013 European Crohn's and Colitis Organisation. Published by Elsevier B.V. All rights reserved.)

Behavioural medicine research provides evidence for the positive effects of cognitive behavioural approaches to psychosocial problems in patients with cancer and other chronic somatic illnesses. In an extension of this research line, Mewes et al. now provide evidence for the cost-effectiveness of cognitive behavioural therapy and physical exercise for alleviating treatment-induced menopausal symptoms in breast cancer patients [J Cancer Surviv, Sep 2 2014]. These important findings are discussed and put into the context of future research and clinical practice regarding quality of life, quality-adjusted life years and patient reported outcomes. The benefits for the women concerned appear to be considerable.

Introduction: This study examined the effectiveness of low-intensity, practice-tailored training for general practitioners (GPs) aimed at personal and organizational barriers that arise when routinely asking patients' smoking status, advising to quit, and arranging follow-up., Methods: A cluster-randomized controlled trial with 49 GPs and 3,401 patients (677 smokers). Two patient groups participated: 2,068 patients (433 smokers) at baseline and 1,333 patients (244 smokers) postintervention. At follow-up, 225 smokers of both groups participated. The primary outcome was GP smoking cessation counseling (asking about smoking status, advising to quit, prescribing pharmacotherapy, and referring for behavioral support). Secondary outcomes were GPs' attitudes toward smoking cessation care, patients' intention to quit, and long-term quit rates. Outcomes were measured with GP self-report and patient report., Results: Patients of trained GPs reported more often being asked about smoking behavior compared with patients of untrained GPs (OR = 1.94, 95% CI = 1.45-2.60). According to GP self-report, the training increased the provision of quit-smoking advices (difference 0.56 advice per day; 95% CI = 0.13-0.98) and the ability and intention of providing smoking cessation care. We found no effect on GPs' arrangement of follow-up, smokers' intention to quit, and long-term quit rates., Conclusions: After 1 hour of training, we found significant differences between trained and untrained GPs on the frequency in which they asked about smoking (patient reported) and advised smokers to quit (GP self-reported). The training did not increase prescriptions of pharmacotherapy, referrals to behavioral support, or quit rates. Future training methods should focus on the GPs' ability, tools, and skills to arrange follow-up to ensure intensive smoking cessation support.

The intercorrelations among the 15 scales of the 30-item Core version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire suggest that one may combine (1) the physical functioning and role functioning scales, (2) the emotional functioning and cognitive functioning scales, and (3) the nine symptom scales. Together with the global health/quality of life scale and the social functioning scale, five measures remain. Principal component analysis of those five measures, using data from Japanese and Dutch breast and lung cancer patients, yielded two dimensions: (1) generalized health related quality of life and (2) health-independent psychological well-being. The correlations of these dimensions with the Brief Illness Perception Questionnaire and Karnofsky performance substantiated this interpretation.

Purpose: The Functional Assessment of Cancer Therapy-Epidermal Growth Factor Receptor Inhibitor 18 (FACT-EGFRI-18) is a patient-reported outcomes questionnaire developed to assess the effect of EGFRI on patients. The FACT-EGFR-18 was translated into Dutch and evaluated in order to document that the translation adequately captures the concepts of the original English-language version of the questionnaire and is readily understood by subjects in the target population., Method: Translation of the FACT-EGFRI-18 from English to Dutch was accomplished by employing the Functional Assessment of Chronic Illness Therapy (FACIT) multilingual translation methodology. Ten native-speaking residents of the target country who reported EGFRI associated dermatological adverse events (dAEs) were asked to review the translation of the harmonized FACT-EGFRI-18., Results: Participants generally found the Dutch FACT-EGFRI-18 easy to understand and complete. In addition, the translation retained the original meaning of the FACT-EGFRI-18 items and instructions. Based on the results of the cognitive debriefing interviews, no changes to improve clarity and comprehension of translations were identified., Conclusions: The Dutch FACT-EGFRI-18 demonstrates content validity and linguistic validity, and was found conceptually equivalent to its English source, thus confirming linguistic validation. The results suggest that the Dutch FACT-EGFRI-18 can be applied to measure dAE related health related quality of life in Dutch-speaking patients undergoing EGFRI therapy. Formal validation of the Dutch FACT-EGFRI-18 is ongoing., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Nonadherence to maintenance medication is common in paediatric chronic conditions. Despite the common belief that nonadherence is therapy-resistant, and the apparent lack of evidence for successful interventions to improve adherence, there is, in fact, a considerable body of evidence suggesting that adherence can be improved by applying specific communicative consultation skills. These can be summarized as the adherence equation: adherence=follow-up+dialogue+barriers and beliefs+empathy and education => concordance. Close follow-up of children with a chronic condition is needed to establish a therapeutic partnership with the family. Teaching self management skills is not a unidirectional process of providing information, but requires a constructive and collaborative dialogue between the medical team and the family. Identifying barriers to adherence can be achieved in a non-confrontational manner, by showing a genuine interest what the patient's views and preferences are. In particular, parental illness perceptions and medication beliefs should be identified, because they are strong drivers of nonadherence. Through empathic evidence-based education, such perceptions and beliefs can be modified. By applying these strategies, concordance between the child's family and the medical team can be achieved, resulting in optimal adherence to the jointly created treatment plan., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Fifty years ago, doctors did not tell their patients they had cancer. Improved patient-physician communication, feminization of the medical profession and increased patient empowerment may have improved matters. However, death is still a subject many doctors find difficult to deal with. We explore this issue in the context of medical humanities. In order to examine the different strategies in coping with illness and death, we compared illness perceptions in a literary text, W;t by Margaret Edson, about a woman who dies of ovarian cancer, with a personal narrative of a patient with ovarian cancer. Although there are many differences between the two patients in historical and cultural background, similarities were found in the way they cope with illness and death anxiety. Insight into illness perceptions and coping strategies of patients with cancer is important for raising awareness in clinicians, leading to improved understanding and better treatment of patients.

Introduction: Although quality of life (QoL) is recognized as an important indicator of the course of a disease, it has rarely been addressed in studies evaluating the outcome of care for patients with pulmonary embolism (PE). This study primarily aimed to evaluate the QoL of patients with acute PE in comparison to population norms and to patients with other cardiopulmonary diseases, using a generic QoL questionnaire. Secondary, the impact of time period from diagnosis and clinical patient characteristics on QoL was assessed, using a disease-specific questionnaire., Methods: QoL was assessed in 109 consecutive out-patients with a history of objectively confirmed acute PE (mean age 60.4 ± 15.0 years, 56 females), using the generic Short Form-36 (SF-36) and the disease specific Pulmonary Embolism Quality of Life questionnaire (PEmb-QoL). The score of the SF-36 were compared with scores of the general Dutch population and reference populations with chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), a history of acute myocardial infarction (AMI), derived from the literature. Scores on the SF-35 and PEmb-QoL were used to evaluate QoL in the short-term and long-term clinical course of patients with acute PE. In addition, we examined correlations between PEmb-QoL scores and clinical patient characteristics., Results: Compared to scores of the general Dutch population, scores of PE patients were worse on several subscales of the SF-36 (social functioning, role emotional, general health (P<0.001), role physical and vitality (P<0.05)). Compared to patients with COPD and CHF, patients with PE scored higher (=better) on all subscales of the SF-36 (P ≤ 0.004) and had scores comparable with patients with AMI the previous year. Comparing intermediately assessed QoL with QoL assessed in long-term follow-up, PE patients scored worse on SF-36 subscales: physical functioning, social functioning, vitality (P<0.05), and on the PEmb-QoL subscales: emotional complaints and limitations in ADL (P ≤ 0.03). Clinical characteristics did not correlate with QoL as measured by PEmb-QoL., Conclusion: Our study demonstrated an impaired QoL in patients after treatment of PE. The results of this study provided more knowledge about QoL in patients treated for PE., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

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., (© 2012 The British Psychological Society.)

Context: Paraganglioma (PGL) patients and succinate dehydrogenase (SDH) gene mutation carriers at risk for PGLs have a decreased quality of life (QoL). QoL may be affected by the strategy an individual uses when dealing with a stressful situation, ie, specific coping styles. Understanding the various approaches to coping may allow the development of targeted interventions to improve patient QoL., Objective: The objective of the study was to assess coping styles in PGL patients and SDH mutation carriers., Design: This was a cross-sectional study., Setting: The study was conducted at a tertiary referral center., Patients and Methods: Coping styles were assessed using the Utrecht Coping List. The results from the study cohort were compared with a control group and data derived from the literature. Potential differences in coping styles between the various SDH mutation carriers and PGL patients without an SDH mutation were explored., Results: Of the 174 patients who responded, 122 were SDHD, 25 SDHB, and 2 SDHC mutation carriers. An additional 25 patients lacked an SDH mutation. They recruited 100 peers as controls. Compared with the general population, the study cohort was more avoidant of problems (P < .001) and reported less expression of emotion (P < .01). Compared with patients with other conditions, they sought more social support (P < .001). There were no significant differences in coping styles between the various categories of mutation carriers or PGL patients lacking a mutation., Conclusions: Coping styles of PGL patients and SDH mutation carriers differ from those of control and reference groups and include an avoidant coping style and a lack of emotional expression.

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.)

Unlabelled: REASON FOR THE STUDY: Clinicians use conserving care in their therapeutic decisions. Discussing death as part of the treatment influences patient's perception and their acceptance of death. We compare 2 literary patients' perceptions of cancer and death (Solzhenitsyn's Cancer ward and Tolstoy's The death of Ivan Ilyich), with a contemporary patient perception., Results: The patient interview revealed naive cancer perceptions: every treatment option should be tried. In Solzhenitsyn's novel, the main character finds a goal in love; Tolstoy conceptualizes death as a solution for patients' moral issues., Conclusions: Tolstoy's novel shows death as an honest prospect. Solzhenitsyn's novel shows the opposite: the prospect of love and life helps the protagonist patient psychologically through his disease. The patient interview revealed no discussion of death at all.

Purpose: The functional assessment of cancer therapy epidermal growth factor receptor inhibitor 18 (FACT-EGFRI-18) is a patient-reported outcomes questionnaire developed to assess the effect of EGFRI on health-related quality of life (HRQoL)., Methods: Ten native-speaking residents of The Netherlands who reported EGFRI-associated mucocutaneous adverse events (mcAEs) were administered the questionnaire. Patients were subsequently asked a standardized series of questions about the items' personal relevance., Results: Responses reflected a major negative impact of mcAEs due to EGFRI on physical, social/emotional, and functional domains. In some cases, especially in the social/emotional domain, the responses to the qualitative interview indicated a greater impact on HRQoL than the numerical ratings previously selected for the Dutch FACT-EGFRI-18 questions., Conclusions: Based on these interviews, we identified that the physical items associated with mcAEs interfere most with HRQoL. The results suggest that the FACT-EGFRI-18 can be applied to measure mcAE-related HRQoL in cancer patients undergoing EGFRI therapy. In addition, patients feel the need to rate their symptom burden, too, and we recommend additional adverse event items to be incorporated into the questionnaire.

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.

Objective: Depressive symptoms are associated with mortality among patients on chronic dialysis therapy. It is currently unknown how different courses of depressive symptoms are associated with both cardiovascular and non-cardiovascular mortality., Methods: In a Dutch prospective nation-wide cohort study among incident patients on chronic dialysis, 1077 patients completed the Mental Health Inventory, both at 3 and 12months after starting dialysis. Cox regression models were used to calculate crude and adjusted hazard ratios (HRs) for mortality for patients with depressive symptoms at 3months only (baseline only), at 12months only (new-onset), and both at 3 and 12months (persistent), using patients without depressive symptoms at 3 and 12months as reference group., Results: Depressive symptoms at baseline only seemed to be a strong marker for non-cardiovascular mortality (HRadj 1.91, 95% CI 1.26-2.90), whereas cardiovascular mortality was only moderately increased (HRadj 1.41, 95% CI 0.85-2.33). In contrast, new-onset depressive symptoms were moderately associated with both cardiovascular (HRadj 1.66, 95% CI 1.06-2.58) and non-cardiovascular mortality (HRadj 1.46, 95% CI 0.97-2.20). Among patients with persistent depressive symptoms, a poor survival was observed due to both cardiovascular (HRadj 2.14, 95% CI 1.42-3.24) and non-cardiovascular related mortality (HRadj 1.76, 95% CI 1.20-2.59)., Conclusion: This study showed that different courses of depressive symptoms were associated with a poor survival after the start of dialysis. In particular, temporary depressive symptoms at the start of dialysis may be a strong marker for non-cardiovascular mortality, whereas persistent depressive symptoms were associated with both cardiovascular and non-cardiovascular mortality., (Copyright © 2013 Elsevier Inc. All rights reserved.)