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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.

Objective We examined smoker and non-smoker self-identities among smokers visiting their general practitioner (GP) for other reasons than smoking cessation counselling. We determined whether identity impacted on patients’ appreciation of GP-initiated conversations about smoking and quit advice, and subsequent quit attempts, and examined the role of gender. Methods Secondary analyses of a cluster-randomised controlled trial in which baseline and 12-month follow-up data were collected among 527 daily (n = 450) and non-daily smokers (n = 77). Results Participants identified more with smoking than non-smoking. Participants with stronger non-smoker self-identities were more often female, appreciated the conversation about smoking more, were more likely to receive quit-advice and to have attempted to quit at 12-month follow-up. Participants with stronger smoker self-identities were also more often female, and appreciated the conversation more. Men with stronger non-smoker self-identities were more often asked about smoking and advised to quit, and appreciated the conversation more than women. Conclusion Non-smoker identity was more important for receiving quit-advice, appreciation, and quit attempts than smoker identity. Future research needs to unravel why female smokers appreciated the conversation less than male smokers. Practice implications We suggest to incorporate an identity-component in smoking cessation interventions. GPs should increase their focus on female patients who smoke.

Objective To investigate whether illness perceptions and coping influence the relationship between back pain and health outcomes in patients suspected of having axial spondyloarthritis (SpA). Methods In the SPondyloArthritis Caught Early cohort, regression models were computed at baseline, with back pain intensity (range 0-10) as the determinant and health-related quality of life, the physical component summary score (PCS) and mental component summary (MCS) of the Short Form 36 (SF-36) health survey, or work productivity loss as outcomes. Subsequently, using Leventhal's Common-Sense Model of Self-Regulation, illness perceptions and, thereafter, coping were added to the models. Analyses were repeated for patients diagnosed and classified as having axial SpA according to the Assessment of SpondyloArthritis international Society axial SpA criteria (ASAS axial SpA), patients only diagnosed with axial SpA (axial SpA-diagnosed only), and those with chronic back pain. Results A total of 424 patients (145 with ASAS axial SpA, 81 with only a diagnosis of axial SpA, and 198 with chronic back pain); 64% of the total group were female, the mean ± SD age was 30.9 ± 8.1 years, and the mean ± SD symptom duration was 13.3 ± 7.1 months) were studied. In all patients, the strength of the associations between back pain and the PCS, back pain and the MCS score, and back pain and loss of work productivity were decreased by adding illness perceptions to the model, but explained variance improved. Adding coping to these models did not change the results. Comparable results were observed in all subgroups. Conclusion Illness perception, but not coping, is important in the relationship between back pain and HRQoL and work productivity loss in patients suspected of having axial SpA, irrespective of subgroup. This finding suggests that targeting illness perceptions could improve health outcomes in patients suspected of having axial SpA.

Within the context of the epidemiological transition – from cure to care – this chapter examines the characterization of “chronic illness” and its implications for the contributions that medical care and behavioral medicine offer to the well-being of patients with those illnesses. It includes a review of theoretical models (including Common Sense and Chronic Care models) that are instrumental and important for providing medical and behavioral medicine care and discusses the increasing role and centrality of the patient or individual in thinking about chronic care. This leads to a discussion of self-management of chronic illness and, then, a review of the empirical literature on the ongoing behavioral management of six major chronic somatic illnesses: asthma, chronic obstructive pulmonary disease (COPD), cancer, cardiovascular disorders (in particular, heart failure), diabetes mellitus, and rheumatoid arthritis. It articulates both disease-specific elements as well as elements that apply across diseases. Self-management and chronic care are discussed within a framework involving community, organizational, and structural factors, diverse resources for self-management (e.g., collaborative goal setting and instruction in key skills), and key self-management behaviors (e.g., healthy diet, use of medication, healthy coping). The chapter closes with the assertion that self-management is a crucial part of quality care, consideration of behaviors as the most important indicators of health, and the argument that, rather than the unrealistic expectation of absence of disease, the field should follow the suggestion of Huber and colleagues and assert that health is the ability to adapt and self-manage.

Item does not contain fulltext 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.

When assessing the risks of a research protocol, review boards need to consider not only the possible harms but also the expected discomfort levels caused by the various study procedures. However, data on how children experience various study procedures are scarce. This study assessed perceived discomfort levels in 671 healthy children aged 0–2 years undergoing vaccinations, venipunctures, and nasopharyngeal swab taking. In half of the study participants, venipunctures caused a moderate or high level of discomfort (49%). Corresponding figures for nasopharyngeal swabbing and vaccinations were 28% and 12%, respectively. Within the reported age group, increasing age was related with higher discomfort levels. In a majority of cases for all study procedures, the perceived levels of discomfort met the parents' expectations.

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. Electronic supplementary material The online version of this article (doi:10.1007/s11102-016-0707-4) contains supplementary material, which is available to authorized users.

Objectives. Although Leventhal's common-sense model (CSM) is proposed to represent a dynamic system, limited research has been conducted to investigate whether and how illness perceptions change. This study tested two hypotheses from the CSM about the dynamics of illness perceptions of patients with chronic obstructive pulmonary disease (COPD) in a pulmonary rehabilitation setting. Design and methods. The study employed a longitudinal design. Patients with COPD (N=87) who took part in a pulmonary rehabilitation programme filled out the Illness Perception Questionnaire – Revised (IPQ-R) before and after treatment and rated the degree to which the rehabilitation had led to the achievement of desired outcomes. Clinical variables and quality of life (Chronic Respiratory Disease Questionnaire) data were obtained from medical records. Results. In line with expectations, results showed that, at baseline, longer time since diagnosis was associated to perceptions corresponding with a chronic illness model (longer illness duration, more experienced consequences, less perceived personal controllability), after correction for clinical variables. After completion of the rehabilitation programme, patients who were more convinced that their participation had led to the achievement of desired outcomes were less concerned about the negative consequences of COPD, had stronger perceptions about the variability in symptoms (cyclical timeline) and had stronger perceptions of personal controllability Conclusions. We conclude that, in accordance with Leventhal et al.'s CSM, coping with an illness is a continuous process and the achievement of desired outcomes during treatment is likely to enable patients to adopt a more positive representation of their illness.

Summary Background In spite of the well-demonstrated benefits for patients with COPD, pulmonary rehabilitation programmes show considerable drop-out and suboptimal attendance rates. The purpose of this prospective study is to examine causes for drop-out and non-attendance during a 12week multidisciplinary pulmonary rehabilitation programme, and to investigate whether sociodemographic and medical factors as well as patients' perception of their illness are related to drop-out and non-attendance. Methods Two hundred and seventeen patients with COPD who were referred to a rehabilitation centre participated in this multicentre study. Prior to treatment, patients received a questionnaire, which included the Illness Perception Questionnaire-Revised. Clinical data were drawn from medical records. Drop-out and attendance were recorded during the programme. Results Fifty patients (23%) did not complete the rehabilitation course, of which half was due to medical reasons (e.g. exacerbations, hospitalisations). Non-completion could not be predicted by baseline sociodemographic, clinical or psychological variables. Patients who declined treatment did not differ from patients who dropped out due to medical reasons. On average, patients attended 92% of all scheduled appointments. Of all missed appointments, approximately 20% were accountable to factors beyond patients' control (e.g. absent therapists, hospitalisations). Smoking, living alone, a lower fat free mass and lower confidence in treatment increased the chance of patients not attending an appointment during rehabilitation. Conclusion In general, adherence in rehabilitation is high. However, paying attention to patients' nutritional status and creating a positive expectation of treatment during referral and intake appear to be important if one aims to optimise patients' attendance during rehabilitation.

Summary Objective To review the topic of behavioural research on patients with COPD over the past 50 years in order to help inform clinical management and future research on psychosocial aspects of COPD. Method Narrative literature review. Results Nine orientations in behavioural research on COPD patients are identified and concisely examined: psychoanalytic approach, psychosomatics, neuropsychology, quality of life, psychomaintenance, patient education, coping and illness cognitions, self-management, and collaborative care. These approaches form a historical sequence of psychosocial perspectives on COPD, of successively increasing utility in COPD research and care. Discussion and conclusion In the past 50 years behavioural research on COPD patients has evolved considerably. Over time, a trend for the patient to become the central actor in the management of the illness is discernable. Evidence-based reviews indicate that self-management offers COPD patients effective options for managing their illness, leading to positive outcomes such as reduced frequency of hospitalization, greater exercise tolerance, and enhanced quality of life. Future research should focus on how self-management skills can be incorporated formally into medical care. In addition to offering suggestions on how clinicians may be instrumental in improving self-management behaviour in COPD patients, and thereby improve care outcomes, we highlight the importance of gaining insight into the perceptions of patients of their own situation, and incorporating a respect for patient perspectives into the philosophy of care.

SummarySexual quality of life was examined in 55 outpatients with chronic obstructive pulmonary disease (COPD) and asthma, using disease-specific questionnaires. Compared to an age- and sex-matched norm group, male patients with COPD reported a significantly lower sexual quality of life on all dimensions of the questionnaire. Female patients with COPD reported a lower frequency of sexual intimacy and lower sexual quality of life overall. Patients with asthma reported sexual quality-of-life scores that were somewhat better than COPD patients but worse than the healthy control group. Patients reported that they did not discuss sexual quality-of-life issues with their physician. Sexuality needs to be discussed by the health care provider in the consultation in order to improve quality of life of patients with chronic respiratory disorders.

Patients with chronic obstructive pulmonary disease have perceptions of their illness and its management that determine their coping behaviors (e.g., adherence, self-management) and, consequently, their outcomes. This article reviews the empirical literature on illness perceptions in patients with COPD to provide clinicians with information regarding the potential utility of incorporating illness perceptions into clinical COPD care.A literature search in PubMed identified 16 studies examining associations between illness perceptions and outcomes in patients with COPD.Seven of the 16 papers were from US authors, followed by 3 each from the UK and The Netherlands, and one study each from Australia, Canada, and New Zealand. The first study was published in 1983, and the numbers of patients per study ranged fom 10 to 266. The illness perceptions were those delineated by two theoretical models (cognitive behavioral theory and the Common Sense Model), and they were assessed with open interviews and validated questionnaires. Outcomes were disability, quality of life, and psychological characteristics. The studies revealed clinically meaningful associations between illness perceptions and outcomes.Our review supports the incorporation of illness perceptions into clinical care for patients with COPD. The assessment of illness perceptions should be routine, similar to routine assessments of pulmonary function. Discussing and changing illness perceptions will improve COPD patients' quality of life and reduce their levels of disability. COPD-specific assessments ("diagnosis") of illness perceptions and COPD-specific intervention methods ("therapy") that help change inadequate and maladaptive illness perceptions are research priorities.

This article reviews an emerging area of research on patients with asthma: namely, illness perceptions and their relationships with various aspects of outcome. The article briefly introduces the Common Sense Model, outlining the relevance of how "lay" patients conceptualize symptoms, illness, and treatment. On the basis of a comprehensive literature search, nine empirical studies illustrating the relationships between illness perceptions and outcomes are discussed. It is concluded that further research should focus on assessing asthma-specific illness and treatment beliefs. Also, given the effects of intervention studies in illness perceptions in other patient categories, it is recommended that serious consideration be given to intervention studies focusing on eliciting and changing illness perceptions in asthma patients, especially in those whose self-management seems to be inadequate.

Research suggests that chronically ill patients and their partners perceive illness differently, and that these differences have a negative impact on patients' quality of life (QoL). This study assessed whether illness perceptions of patients with Huntington's disease (HD) differ from those of their partners, and examined whether spousal illness perceptions are important for the QoL of the couples (n = 51 couples). Partners reported that their HD-patient spouses suffered more symptoms and experienced less control than the patients themselves reported. Illness perceptions of patients and partners correlated significantly with patient QoL. Partners' beliefs in a long duration of the patients' illness and less belief in cure, were associated with patient vitality scores. Suggestions for future research emphasize the importance of qualitative research approaches in combination with cognitive-behavioural approaches.

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. We conducted a systematic literature search up to January 2014 in PubMed, Web of Knowledge, PsycInfo and EMBASE. 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. 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.

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.

Summary Objectives Using the International Classification of Functioning, Disability and Health as framework, we evaluated modifying effects of illness perceptions and mental health on the association between impairments in body structures and functions due to osteoarthritis (OA) and limitation in activities in the lower extremities. Methods Self-reported limitation in activities was assessed by the Western Ontario and McMaster Universities OA index (WOMAC) function subscale in 316 patients with knee or hip pain or evidence of OA on knee or hip radiographs. Body structures and functions were evaluated during clinical and radiological assessments. Illness perceptions and mental health were assessed with the revised Illness Perception Questionnaire (IPQ-R) and the mental component summary score of the RAND 36-item Health Survey, respectively. For each patient an expected WOMAC function score was calculated, using an equation based on a multivariate model of the association of body structures and functions with limitation in activities. Results The median (interquartile) self-reported WOMAC function score was 22.2 (9.6–43.5). Ninety-one patients reported more and 120 patients reported less limitation in activities than expected. Patients with lumbar spine degeneration, physical or exercise therapy and high IPQ-R identity, consequences and chronic timeline scores had an increased risk to report more limitation in activities than the expected range. Low IPQ-R identity, consequences and emotional representation scores and better mental health were associated with reporting less limitation in activities than the expected range. Conclusion Illness perceptions and mental health modify the association between self-reported limitation in activities and calculated limitation in activities based on impairments in body structures and functions due to OA.

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

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.

Item does not contain fulltext 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

In a longitudinal study (two measurements with a 1-year interval), 69 patients with psoriasis completed the Illness Perception Questionnaire, the Medical Outcomes Study SF-20 Health Survey, and the Hospital Anxiety and Depression Scale. Data on coping (Utrecht Coping List) and severity of illness (body surface scores) were also collected. The results of regression analyses indicated that a strong illness identity was associated with more visits to the outpatient clinic, and worse outcome on physical health social functioning, mental health, health perceptions and depression. Strong beliefs that the disease is controllable/curable and that the disease has disabling consequences were also related to more clinic visits and more negative perceived health, respectively. Patients who initially engaged in coping characterized by more expression of emotions, seeking more social support, seeking more distraction, and less passive coping were prescribed a lower number of different therapies, were less anxious, less depressed, and had a better physical health 1 year later. These results have implications for the management of patients with psoriasis, which reinforces current views on integrating psychosocial aspects into clinical care.

We studied the contribution of coping and illness perceptions to outcome in patients with chronic obstructive pulmonary disease (COPD). In a longitudinal study, 64 patients completed the Medical Outcomes Study Instrument and the Illness Perception Questionnaire. Data on coping and severity of illness (spirometry) were also collected. Regression analyses showed that first-time illness perceptions and coping significantly contributed to the prediction of social functioning, mental health, health perceptions, total functioning score, and prediction of visits to the outpatient clinic and prescribed medication 1 year later. These results have important implications for the medical management of patients with COPD.

Background. Self-regulation theory explains how patients' illness perceptions influence self-management behaviour (e. g. via adherence to treatment). Following these assumptions, we explored whether illness perceptions of ESRD-patients are related to mortality rates.Methods. Illness perceptions of 182 patients participating in the NECOSAD-2 study in the period between December 2004 and June 2005 were assessed. Cox proportional hazard models were used to estimate whether subsequent all-cause mortality could be attributed to illness perception dimensions.Results. One-third of the participants had died at the end of the follow-up. Mortality rates were higher among patients who believed that their treatment was less effective in controlling their disease (perceived treatment control; RR = 0.71, P = 0.028). This effect remained stable after adjusting for sociodemographic and clinical variables (RR = 0.65, P = 0.015).Conclusions. If we consider risk factors for mortality, we tend to rely on clinical parameters rather than on patients' representations of their illness. Nevertheless, results from the current exploration may suggest that addressing patients' personal beliefs regarding the effectiveness of treatment can provide a powerful tool for predicting and perhaps even enhancing survival.

The present cross-sectional study analyzed the extent to which illness perceptions and coping strategies (as measured by the Illness Perception Questionnaire and the Utrecht Coping List, respectively) are associated with levels of daily functioning, as indicated by the Medical Outcomes Study SF-20, and disease-specific measures in 244 adults: 84 with rheumatoid arthritis (RA); 80 with chronic obstructive lung disease (COPD); and 80 with psoriasis. The results of stepwise regression analyses indicated that a strong illness identity, passive coping, belief in a long illness duration, belief in more severe consequences, and an unfavorable score on medical variables were associated with worse outcome on disease-specific measures of functioning and on general role and social functioning. Coping by seeking social support and beliefs in controllability/curability of the disease were significantly related to better functioning. The implications of these findings for future interventions and research are discussed.

This chapter starts with a description of the main disease characteristics and psychosocial consequences of chronic obstructive pulmonary disease (COPD), a multisystem disease with significant comorbidities. Comprehensive pulmonary rehabilitation programs (PRPs) aim at tackling these systemic consequences of COPD by combining self-management education, exercise training, nutritional intervention, and psychosocial and support interventions. Research on the effects of psychosocial interventions within programs is scarce. Studies on cognitive-behavioral interventions for anxiety and depression provide proof that a combination of strategies can add extra results to the positive effects that pulmonary rehabilitation in itself has on COPD symptoms. The results from studies on relaxation techniques for stress management and relieving breathlessness do not suggest much specific benefit for progressive muscle relaxation or other strategies. Currently, the evidence is largely absent that should guide “who does what and how“in the psychosocial components of pulmonary rehabilitation.

Bij veel respiratoire aandoeningen spelen (interacties tussen) psychosociale en gedragsmatige factoren een grote rol bij het veroorzaken van de aandoening en het verergeren van de gevolgen ervan. In dit hoofdstuk worden de respiratoire aandoeningen beschreven waarvoor dit zeker geldt en die tevens het meest voorkomen: astma (met een focus op volwassenen), chronisch obstructief longlijden ofwel ‘chronic obstructive pumonary disease’ (COPD) en longkanker. Het meest kenmerkend voor respiratoire aandoeningen zijn kortademigheid en (aanvallen van) benauwdheid. Wat dat kan betekenen voor patienten, werd al omstreeks het begin van onze jaartelling treffend beschreven door de beroemde filosoof Seneca in zijn Epistulae morales ad Lucilium(Hunink, 2009): ‘(…) er is een specifieke aandoening waaraan ik zogezegd ben toegewezen. Ik kan daar een Griekse naam voor gebruiken, maar waarom zou ik? “Ademnood” is hier een tamelijk geschikte aanduiding. (…) Alle lichamelijke ongemakken en gevaren heb ik wel doorlopen, maar niets lijkt mij zo bezwaarlijk als dit. Vind je het gek? Al het andere valt onder “ziek zijn”, maar dit is een “laatste adem”. Daarom spreken doktoren hier van een “oefening in sterven”. Ooit doet je ademhaling echt wat ze zo vaak heeft geprobeerd.’

ObjectiveChronic tinnitus can severely impair a person's quality of life. The degree of impairment, however, is not closely related to tinnitus loudness. Applying the common sense model (CSM) of self-regulation of health and illness, this study investigated to what extent psychological factors, i.e. illness representations and positive/negative self-instructions, are associated with the degree of tinnitus-related complaints.MethodsIn this cross-sectional study, 118 patients diagnosed with chronic tinnitus filled in questionnaires assessing illness representations (IPQ-R), positive and negative self-instructions (TRSS), and tinnitus-related complaints (TQ).ResultsThe regression analysis yielded a number of significant associations between illness representations and tinnitus-related complaints, particularly for the IPQ-R dimensions identity, consequences, coherence, and emotional representations. With regard to self-instructions and tinnitus-related complaints, significant effects were found only for negative self-instructions. Moreover, multiple mediation analyses revealed that the effects of consequences and emotional representations on tinnitus-related complaints were (partially) due to the use of negative self-instructions.ConclusionPsychological factors are strongly related to the extent of tinnitus-related complaints. The findings provide an indication of which aspects should be targeted in psychological and psychotherapeutic tinnitus treatment.

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

Objective: To examine psychosocial concomitants, illness perceptions, and treatment perceptions in patients with adductor spasmodic dysphonia. Design: Prospective controlled cohort study. Setting: A tertiary care facility. Participants: Forty-nine out-patients (38 women, 11 men; average age of 52 years) with adductor spasmodic dysphonia completed a battery of reliable and validated psychometric assessment instruments. Control patients’ data were derived from scores in questionnaires by samples in the formal Manuals of the questionnaires used. Main outcome measures: Psychosocial functioning, illness perceptions, and treatment perceptions. Results: Scores on psychosocial measures were elevated in male patients especially, indicating levels of psychological morbidity significantly above those seen in the general population. Assessments of illness perceptions and treatment perceptions indicated that patients perceive that they have a very low degree of control over the disorder, and experience a high emotional impact from it. Voice Handicap Index scores illustrated substantial degrees of perceived handicap. Conclusions: Adductor spasmodic dysphonia is associated with significant negative psychosocial concomitants, coupled with low perceived control over the condition. Future research should elucidate the implications of illness perceptions and treatment perceptions for the biopsychosocial care of persons with adductor spasmodic dysphonia in order to improve self-management and enhance quality of life.

Objective: To examine the association between changes in common sense models and changes infunctional status over a 6-year follow-up in patients with osteoarthritis. Design: At baseline andfollow-up, osteoarthritis outpatients ( N 241) recruited from a university medical center completed theIllness Perception Questionnaire—Revised (IPQ-R), the Australian/Canadian Osteoarthritis Hand Index,and the Western Ontario and McMasters Universities Osteoarthritis Index. Also, their physician-assessedpain intensity, and biomedical, and clinical measures of medical severity of osteoarthritis were recorded.Main outcome measures: Functional disability, pain intensity. Results: Over 6 years, functionaldisability and pain intensity increased. The IPQ-R dimensions of timeline, personal control, and illnesscoherence became more negative, and emotional representations became less negative (i.e., moreaccepting). Patients identified as sharing a similar profile of negative changes on the IPQ-R hadsignificantly worse functioning on 2 of 3 outcomes, independent of objectively measured osteoarthritisseverity. Conclusions: Changes in illness perceptions were associated with changes in outcomes.Interventions to prevent increasingly negative patterns of illness perceptions over time, with anemphasis on strengthening control cognitions, may benefit functional status outcomes in patientswith osteoarthritis.Keywords: common sense model, illness perceptions, longitudinal design, osteoarthritis, self-management

This paper reviews psychological aspects of respiratory disorders, in particular asthma and COPD (chronic obstructive pulmonary disease). It discusses definition, epidemiology, risk factors and medical management of both disorders, in the context of psychological and social factors. Psychosocial consequences of asthma are described, as is the psychological management of patients with this respiratory disorder. On the basis of Cochrane reviews, a cautious optimism seems warranted: incorporating self-management training into medical care leads to positives outcomes for patients with asthma.

Background: Interactions between depressed persons and persons within their social network are often characterized by misunderstanding and unsuccessful social support attempts. These interpersonal problems could be fostered by discrepancies between depressed and never-depressed persons' illness representations of depression and/or discrepancies in the perceived helpfulness of supportive behaviors.Methods: Illness representations of depression (IPQ-R) and perceptions of the helpfulness of different social support behaviors (ISU-DYA and ISAD) were assessed in 41 currently depressed persons and 58 persons without a history of depression.Results: Never-depressed persons perceived depression as more controllable by treatment and as less emotionally impairing than depressed persons, but also as having more severe consequences. Never-depressed persons considered activation-oriented support (motivation to approach problems) as more helpful and protection-oriented support (allowance to draw back) as less helpful in comparison to depressed persons.Limitation: Data were collected in unrelated samples of depressed and never-depressed persons.Conclusions: Discrepancies in illness representations and perceptions of the helpfulness of social support do exist and may be the origin of problematic social interactions between depressed patients and persons within their social network. Therapeutic interventions should address the issue of conflicting perceptions and encourage depressed patients to acknowledge and discuss this topic within their social network.

Objective To investigate changes in illness perceptions in patients with osteoarthritis (OA) and the association of those changes with disability, and to determine the predictive value of illness perceptions in disability. Methods Illness perceptions and disability were measured at baseline and after 6 years in 241 patients with OA at multiple sites (mean age 59.0 years, 82.2% women) using the revised Illness Perception Questionnaire (IPQ-R) and the Health Assessment Questionnaire (HAQ), respectively. Mean changes for each IPQ-R dimension were reported and related to progression of disability, defined as the highest quartile of HAQ score change. The predictive value of baseline illness perceptions in disability at 6 years (with high disability defined as the highest quartile of HAQ score) was assessed using logistic regression. Results Illness perceptions changed over time, and these changes were related to the progression of disability. Patients with progression of disability had an increase in symptoms attributed to OA, perceived consequences, perceived disease chronicity, negative emotions associated with OA and beliefs about immunity as causal factor, and a decrease in perceived control and understanding of OA compared with patients without progression of disability. Moreover, a higher number of symptoms attributed to OA, less perceived control, and more perceived consequences of OA at baseline were predictive of high disability after 6 years. Conclusion Illness perceptions in patients with OA changed over time, and these changes were related to outcome. Moreover, illness perceptions were predictive of disability. This may imply that interventions aimed at changing illness perceptions can contribute to better functional outcome.

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.

Objective: To examine patients' pretreatment beliefs and goals regarding pulmonary rehabilitation. Design: Qualitative study using semi-structured interviews. Setting: Interviews conducted at participants' homes. Subjects: Twelve patients with chronic obstructive pulmonary disease who had been referred to a rehabilitation clinic. Main measures: Patients' beliefs about pulmonary rehabilitation, self-set treatment goals and anticipated reasons for drop-out. Results: Patients' beliefs about pulmonary rehabilitation comprised positive aspects (participation as an opportunity for improvement, a safe and multidisciplinary setting, presence of motivating and supporting patients) and negative aspects of exercising in a rehabilitation centre (e.g. disruption of normal routine, being tired after training, transportation difficulties, limited privacy and confrontation with severely ill patients). Four types of treatment goals were formulated: increase in functional performance, weight regulation, reduction of dyspnoea, and improvement of psychosocial well being. Four clusters of anticipated reasons for drop-out were identified: the intensity of the programme, barriers to attending (e.g. transportation problems, sudden illness and other duties/responsibilities), lack of improvement and social factors. Four different attitudes towards pulmonary rehabilitation could be distinguished: optimistic, ‘wait and see’, sceptic and pessimistic. Follow-up data revealed that whereas a pessimistic attitude (high disability, low self-confidence, many concerns) was related to decline, the ‘sceptic’ patients had dropped out during the course. Conclusions: Uptake and drop-out may be related to patients' perceived disabilities, expected benefits and concerns with regard to rehabilitation, practical barriers and confidence in their own capabilities.

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

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. 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. 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). 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.