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This study explored the experienced impact of alopecia using patient's drawings. Forty patients made drawings of their feelings about appearance of their head and hair before and during chemotherapy. Patients also reported illness perceptions (B-IPQ). Twenty-four patients (60%) reported ⩾50% alopecia at enrollment. Most patients (70%) drew a negative change of feelings over time and physical changes. Many experiences related to alopecia emerged from the written texts underneath the drawings and the B-IPQ. Drawings depicted deteriorated feelings of appearance, affecting many activities throughout the day. Healthcare providers are advised to use patient-tailored questioning about alopecia.

Purpose: Scalp cooling can prevent chemotherapy-induced alopecia (CIA). Previously, the post-infusion cooling time (PICT) could be successfully reduced in docetaxel-treated patients from 90 to 45 and 20 min. Therefore, it seems plausible that the PICT can be shortened for paclitaxel-treated patients as well., Methods: Patients treated with weekly paclitaxel were included in this multi-centre trial and randomly assigned to a PICT of 45 or 20 min. The results were compared to a standard PICT of 90 min, derived from prospective collected data from the Dutch Scalp Cooling Registry. The primary endpoint was the percentage of patients who decide to not wear a wig or head covering. Secondary endpoints were the degree of CIA assessed with the Dean scale for assessment of hair loss; alopecia graded according to NCI CTC toxicity version 4.03 (CTCAE4.03); tolerance of scalp cooling and perceived distress of CIA., Results: Ninety-one patients were enrolled in this study; 74 patients were evaluable for hair loss. Hair preservation was successful in 27 patients (75%) with a PICT of 45 min and in 31 patients (82%) with a PICT of 20 min. There was no difference in success rate with the standard PICT of 90 min (85%, p = 0.29). Similar success rates were seen when using the Dean scale and CTCAE assessment, with no differences between groups (p = 0.12 and p = 0.38)., Conclusions: A 20 min PICT is as effective as 45 and 90 min to prevent weekly paclitaxel-induced alopecia and should be the new standard of care., Trial Register: ClinicalTrials.gov Identifier: NCT03266185., (© 2022. The Author(s).)

Background: Patients with inflammatory bowel disease (IBD) undergo surveillance colonoscopies at fixed intervals to reduce the risk of colorectal cancer (CRC). Taking patients' preferences for determining surveillance strategies into account could improve adherence and patient satisfaction. This study aimed to determine patient preferences for CRC surveillance in IBD., Methods: We conducted a web-based, multicenter, discrete choice experiment among adult IBD patients with an indication for surveillance. Individuals were repeatedly asked to choose between 3 hypothetical surveillance scenarios. The choice tasks were based on bowel preparation (0.3-4 L), CRC risk reduction (8% to 1%-6%), and interval (1-10 years). Attribute importance scores, trade-offs, and willingness to participate were calculated using a multinomial logit model. Latent class analysis was used to identify subgroups with similar preferences., Results: In total, 310 of 386 sent out questionnaires were completed and included in the study. Bowel preparation was prioritized (attribute importance score 40.5%) over surveillance interval and CRC risk reduction (31.1% and 28.4%, respectively). Maximal CRC risk reduction, low-volume bowel preparation (0.3 L laxative with 2 L clear liquid) with 2-year surveillance was the most preferred combination. Three subgroups were identified: a "surveillance avoidant," "CRC risk avoidant," and "surveillance preferring" groups. Membership was correlated with age, educational level, perceived CRC risk, the burden of bowel preparation, and colonoscopies., Conclusions: Inflammatory bowel disease patients consider bowel preparation as the most important element in acceptance of CRC surveillance. Heterogeneity in preferences was explained by 3 latent subgroups. These findings may help to develop an individualized endoscopic surveillance strategy in IBD patients., (© 2021 Crohn’s & Colitis Foundation. Published by Oxford University Press on behalf of Crohn’s & Colitis Foundation.)

Novels represent a corpus of data that offers innovative opportunities for research and theory in health psychology. This article discusses how adding 'health humanities' to health psychology opens up a potentially rich domain for research and clinical application. The concept of 'health humanities' is discussed and put into a context of related fields. The concepts of 'illness perceptions' and 'models of patient-health care provider interaction' are used as illustrations. Applications are given, focusing on patients and their caregivers, health care providers and society at large (bibliotherapy and expressive writing). Suggestions for further development of the area are included.

Objective: Chemotherapy-induced alopecia (CIA) is one of the most common and distressing side effects of chemotherapy treatment. This study aims to assess the illness perceptions of female patients dealing with CIA, and their associations with demographic and clinical characteristics, coping strategies, and quality of life. The secondary aim was to compare the illness perceptions of patients with CIA with other samples, to help elucidate the specific perceptions of patients with CIA., Method: Forty female patients at risk of severe hair loss due to chemotherapy treatment were included at the oncological daycare unit of a teaching hospital in the Netherlands. Patients were asked to complete the Brief-Illness Perception Questionnaire (B-IPQ) and the Hair Quality of Life (Hair-QoL) questionnaire., Results: Illness perceptions indicated that although patients understood their hair loss, they lacked being able to make sense of managing it, negatively impacting patients' lives. Psychological quality of life was significantly correlated with the B-IPQ domains: consequences, degree of concern, and emotional response. Social quality of life was significantly correlated with psychological quality of life. Patients with CIA felt significantly less able to manage their hair loss, compared to patients with breast cancer and psoriatic arthritis., Conclusion: As patients' beliefs of being able to manage their hair loss are important for adopting and maintaining adequate coping behaviors, additional effort of health care providers in fostering patients' sense of control is indicated, focusing on patients' strengths during and after chemotherapy treatment. In the context of developing interventions for patients with CIA, consequences, concern, and emotional response are the major dimensions that should be taken in account to help patients deal with hair loss., (© 2021. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Introduction: To understand how individuals (self-)manage obesity, insight is needed into how patients perceive their condition and how this perception translates into health outcomes (e.g., health-related quality of life, HRQOL). Our objectives were (1) to examine illness perceptions in individuals with overweight and obesity, and (2) to investigate associations of these perceptions with physical and mental HRQOL., Methods: In a cross-sectional analysis of the Netherlands Epidemiology of Obesity Study (n = 6432; 52% women), illness perceptions were assessed using the Brief Illness Perception Questionnaire, and HRQOL was assessed using the 36-Item Short-Form Health Survey. Illness perceptions were calculated for different categories of overall, abdominal, and metabolically unhealthy obesity. We investigated associations of illness perceptions with HRQOL using BMI-stratified multivariable linear regression analyses., Results: Compared to individuals with normal weight, individuals with obesity believed to a higher extent that their condition had more serious consequences [Mean Difference (95%CI): 1.8 (1.6-2.0)], persisted for a longer time [3.4 (3.2-3.6)], manifested in more symptoms [3.8 (3.6-4.0)], caused more worry [4.2 (3.9-4.4)] and emotional distress [2.0 (1.8-2.2)], but was more manageable with medical treatment [3.1 (2.9-3.4)]. They perceived to a lesser extent that they had personal control [-2.2 (-2.4, -2.0)] and understanding [-0.3 (-0.5, -0.1)] regarding their condition. These negative perceptions were less pronounced in individuals with abdominal obesity. Behaviour/Lifestyle was attributed by 73% of participants to be the cause of their obesity. Stronger negative illness perceptions were associated with impaired HRQOL, particularly the physical component., Conclusion: Individuals with obesity perceived their conditions as threatening, and this seemed somewhat stronger in individuals with overall obesity than those with abdominal obesity. Behaviour/Lifestyle is a crucial target intervention and empowering self-management behaviour to achieve a healthy body weight may deliver promising results. In addition, strategies that aim to change negative perceptions of obesity into more adaptive ones may improve HRQOL., (© 2021. The Author(s), under exclusive licence to Springer Nature Limited.)

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

Purpose: Novels and autopathographies that employ cancer as a central theme offer a wealth of opportunities for researching the way patients with cancer make sense of their illness and its treatment. Such literatures can also inform clinical care, because they can support patients in living with their illness. The use of novels and autopathographies for research and care in persons with cancer fits within the framework of 'Health Humanities', the interdisciplinary field where medicine and social science meet. This paper presents a concise overview of novels and autopathographies that explore cancer as their theme., Methods: Literature searches were conducted using PubMed, major scientific journals of medicine and clinical oncology, and databases in the Health Humanities. Searches focused on novels and autopathographies where cancer is the central theme, which are available in English, and which can be considered to represent 'high literature'., Results: Twenty-nine books were identified. The majority of the books were written originally in English, and breast cancer and lung cancer were the most frequently discussed types of cancer. The core themes identified were giving meaning to illness; coping with medical treatment; and the psychological and social consequences of illness., Conclusion: Novels and autopathographies about cancer represent an innovative base for research on living with cancer and offer rich data on how people make sense of cancer and its medical treatment. Clinical implications of this review pertain to interventions based on bibliotherapy and expressive writing. Novels and autopathographies are just part of the Health Humanities context: a wide range of art genres may prove helpful in improving the quality of life of persons with cancer.

Purpose: In the phase II DIRECT study a fasting mimicking diet (FMD) improved the clinical response to neoadjuvant chemotherapy as compared to a regular diet. Quality of Life (QoL) and illness perceptions regarding the possible side effects of chemotherapy and the FMD were secondary outcomes of the trial., Methods: 131 patients with HER2-negative stage II/III breast cancer were recruited, of whom 129 were randomly assigned (1:1) to receive either a fasting mimicking diet (FMD) or their regular diet for 3 days prior to and the day of neoadjuvant chemotherapy. The European Organisation for Research and Treatment of Cancer (EORTC) questionnaires EORTC-QLQ-C30 and EORTC-QLQ-BR23; the Brief Illness Perception Questionnaire (BIPQ) and the Distress Thermometer were used to assess these outcomes at baseline, halfway chemotherapy, before the last cycle of chemotherapy and 6 months after surgery., Results: Overall QoL and distress scores declined during treatment in both arms and returned to baseline values 6 months after surgery. However, patients' perceptions differed slightly over time. In particular, patients receiving the FMD were less concerned and had better understanding of the possible adverse effects of their treatment in comparison with patients on a regular diet. Per-protocol analyses yielded better emotional, physical, role, cognitive and social functioning scores as well as lower fatigue, nausea and insomnia symptom scores for patients adherent to the FMD in comparison with non-adherent patients and patients on their regular diet., Conclusions: FMD as an adjunct to neoadjuvant chemotherapy appears to improve certain QoL and illness perception domains in patients with HER2-negative breast cancer. Trialregister ClinicalTrials.gov Identifier: NCT02126449.

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

Purpose: The diagnosis and treatment of cancer negatively affect patients' physical, functional and psychological wellbeing. Patients' needs for care cannot be addressed unless they are recognized by healthcare providers (HCPs). The use of quality of life (QoL) assessments with feedback to HCPs might facilitate the identification and discussion of QoL-topics., Methods: 113 patients with stage I-IIIB breast cancer treated with chemotherapy were included in this randomized controlled trial. Patients were randomly allocated to receive either usual care, or usual care with an intervention consisting of a QoL-monitor assessing QoL, distress and care needs before every chemotherapy cycle visit. Patients completed questionnaires regarding QoL, illness perceptions, self-efficacy, and satisfaction with communication. From the 2nd visit onwards, patients in the intervention arm and their HCPs received a copy of the QoL overview and results were shown in patients' medical files. Audio-recordings and patients' self-reports were used to investigate effects on communication, patient management and patient-wellbeing. A composite score for communication was calculated by summing the number of QoL-topics discussed during each consultation., Results: Use of the QoL-monitor resulted in a higher communication score (0.7 topics increase per visit, p = 0.04), especially regarding the disease-specific and psychosocial issues (p < 0.01). There were no differences in patient management, QoL, illness perceptions or distress. Patients in the experimental arm (n = 60) had higher scores on satisfaction with communication (p < 0.05)., Conclusions: Use of a QoL-monitor during chemotherapy in patients with early breast cancer might result in a more frequent discussion of QoL-topics, associated with high levels of patients' satisfaction.

Objective: Asthma control and quality of life (QoL) are important disease outcomes for asthma patients. Illness perceptions (cognitive and emotional representations of the illness) and medication beliefs have been found to be important determinants of medication adherence, and subsequently disease control and QoL in adults with asthma. In adolescents, this issue needs further elucidation. Therefore, the aim of this study was to explore the relationship between illness perceptions, medication beliefs, medication adherence, disease control, and QoL in adolescents with asthma. Methods: In this cross-sectional study, we used baseline data of adolescents with asthma (age 12-18 years) who participated in the ADolescent Adherence Patient Tool (ADAPT) study. Questionnaires were administrated online, and included sociodemographic variables and validated questionnaires measuring self-reported illness perceptions, medication beliefs, medication adherence, disease control, and QoL. Results: Data of 243 adolescents with asthma were available; age 15.1 ± 2.0 years and 53% females. More than half of these adolescents (62%; n  = 151) reported to be non-adherent (Medication Adherence Report Scale ≤23) and 77% ( n  = 188) had uncontrolled asthma. There was a strong positive correlation between disease control and QoL ( r  = 0.74). All illness perceptions items were correlated with disease control and QoL, with the strongest correlation between 'identity' (symptom perception) and QoL ( r =-0.66). Medication adherence was correlated to medication beliefs ( r  = 0.38), disease control ( r  = 0.23), and QoL ( r  = 0.14), whereas medication beliefs were only associated with adherence. Conclusions: Stimulating positive illness perceptions and medication beliefs might improve adherence, which in turn might lead to improved disease control and better QoL.

Objectives: This study explores illness perceptions, risk perceptions and degree of worry in patients with recently diagnosed systemic sclerosis (SSc). Specifically, it aims to answer whether and how early diagnosis in a stage that disease is relatively mild can impact patients' lives, and if and how disease severity associates with illness perceptions and risk perception., Methods: Patients with a diagnosis of SSc <2 years were invited to participate in a focus group discussion for in-depth exploration of illness perceptions, risk perceptions and worry. In addition, illness perceptions, risk perceptions and worries were evaluated with the use of questionnaires. To explore how patients perceive SSc, we asked them to draw their disease. Physician global assessment of disease severity was used to measure disease severity. Associations between disease severity, illness/risk perceptions, drawings and elements of the focus group were assessed., Results: We observed three dimensions of illness perception as most relevant for patients: personal control, concern and consequences. Patients with SSc experienced many symptoms and felt low personal control. Concerns about the future were often mentioned, and the majority of patients scored high on the worry questionnaire. None of the patients was preoccupied with prognosis or death. All drawings illustrate the impact of SSc on daily life and psychological well-being. Illness perceptions were highly variable between patients and did not associate with disease severity., Conclusion: This study showed that a diagnosis of early SSc had a significant impact on patients' lives, also in the absence of severe disease complications., (© 2020 The Authors. Musculoskeletal Care published by John Wiley & Sons Ltd.)

Background: Improving teamwork in surgery is a complex goal and difficult to achieve. Human factors questionnaires, such as the Safety Attitudes Questionnaire (SAQ), can help us understand medical teamwork and may assist in achieving this goal., Objective: This paper aimed to assess local team and safety culture in a cardiovascular surgery setting to understand how purposeful teamwork improvements can be reached., Methods: Two cardiovascular surgical teams performing complex aortic treatments were assessed: an endovascular-treatment team (ETT) and an open-treatment team (OTT). Both teams answered an online version of the SAQ Dutch Edition (SAQ-NL) consisting of 30 questions related to six different domains of safety: teamwork climate, safety climate, job satisfaction, stress recognition, perceptions of management, and working conditions. In addition, one open-ended question was posed to gain more insight into the completed questionnaires., Results: The SAQ-NL was completed by all 23 ETT members and all 13 OTT members. Team composition was comparable for both teams: 57% and 62% males, respectively, and 48% and 54% physicians, respectively. All participants worked for 10 years or more in health care. SAQ-NL mean scores were comparable between both teams, with important differences found between the physicians and nonphysicians of the ETT. Nonphysicians were less positive about the safety climate, job satisfaction, and working climate domains than were the physicians (P<.05). Additional education on performed procedures, more conjoined team training, as well as a hybrid operating room were suggested by participants as important areas of improvement., Conclusions: Nonphysicians of a local team performing complex endovascular aortic aneurysm surgery perceived safety climate, job satisfaction, and working conditions less positively than did physicians from the same team. Open-ended questions suggested that this is related to a lack of adequate conjoined training, lack of adequate education, and lack of an adequate operating room. With added open-ended questions, the SAQ-NL appears to be an assessment tool that allows for developing strategies that are instrumental in improving quality of care., (©Alexander D Hilt, Ad A Kaptein, Martin J Schalij, Jan van Schaik. Originally published in JMIR Human Factors (http://humanfactors.jmir.org), 08.04.2020.)

Artistic representations of disease are widespread yet largely ignored in health psychology research. In this paper we use two infectious diseases, tuberculosis and the plague, as tracers to study how infectious diseases are represented in novels, films, paintings, and songs. They were represented especially in terms of their causes and seriousness. Studying how diseases are represented in various art forms extends our understanding of how they are socially constructed. This knowledge can also be incorporated into the training of health care providers to sensitize them to issues in patient care.

Objective: Individuals with cancer experience the impact of chemotherapy on hair loss in different ways. The aim of this pilot study was to explore patients' experiences of alopecia through patients' drawings., Methods: Fifteen female patients diagnosed with cancer and treated with chemotherapy were recruited at the oncological day-care unit of a teaching hospital in the Netherlands. Participants completed a semi-structured interview about alopecia. They drew their head and hair before and during chemotherapy and completed the Brief Illness Perception Questionnaire (B-IPQ)., Results: The drawings revealed predominantly physical effects, rather than emotions. Emotions were evident in the text that patients wrote under the drawings and in the B-IPQ open question about the perceived consequences of alopecia. The overall impact of alopecia that emerged from the drawings and the B-IPQ corresponded to the information retrieved from the interviews, namely disappointment, insecurity, sadness, and confrontation., Conclusions: Drawings expose cognitive and emotional responses to alopecia that may be relatively unexplored when using traditional assessment methods such as questionnaires or interviews. In future research, the drawing instructions need to be more specifically focused on feelings in order to better capture emotional reactions to hair loss., Competing Interests: There are no conflicts of interest., (Copyright: © 2020 Ann & Joshua Medical Publishing Co. Ltd.)

Objective: Unmet health care needs require additional care resources to achieve optimal patient well-being. In this nationwide study we examined associations between a number of risk factors and unmet needs after treatment among women with breast cancer, while taking into account their health care practices. We expected that more care use would be associated with lower levels of unmet needs., Methods: A multicenter, prospective, observational design was employed. Women with primary breast cancer completed questionnaires 6 and 15 months post-diagnosis. Medical data were retrieved from medical records. Direct and indirect associations between sociodemographic and clinical risk factors, distress, care use, and unmet needs were investigated with structural equation modeling., Results: Seven hundred forty-six participants completed both questionnaires (response rate 73.7%). The care services received were not negatively associated with the reported levels of unmet needs after treatment. Comorbidity was associated with higher physical and daily living needs. Higher age was associated with higher health system-related and informational needs. Having had chemotherapy and a mastectomy were associated with higher sexuality needs and breast cancer-specific issues, respectively. A higher level of distress was associated with higher levels of unmet need in all domains., Conclusions: Clinicians may use these results to timely identify which women are at risk of developing specific unmet needs after treatment. Evidence-based, cost-effective (online) interventions that target distress, the most influential risk factor, should be further implemented and disseminated among patients and clinicians., (© 2019 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Background: The number of women with breast cancer in general practice is rising. To address their needs and wishes for a referral, GPs might benefit from more insight into women's health care practices and need for additional support., Objective: To examine the prevalence of health care use and remaining needs among women with breast cancer in the first 15 months after diagnosis., Methods: In this multicentre, prospective, observational study women with breast cancer completed a questionnaire at 6 and 15 months post-diagnosis. Medical data were retrieved through chart reviews. The prevalence of types of health care used and remaining needs related to medical, psychosocial, paramedical and supplementary service care (such as home care), was examined with descriptive analyses., Results: Seven hundred forty-six women completed both questionnaires. At both assessments patients reported that they had most frequent contact with medical and paramedical providers, independent of types of treatment received. Three to fifteen percent of the patients expressed a need for more support. Prominent needs included a wish for more frequent contact with a physiotherapist, a clinical geneticist and a psychologist. Patients also wanted more help for chores around the house, particularly in the early post-treatment phase., Conclusion: A small but relevant percentage of women with breast cancer report having unmet needs. GPs may need to be particularly watchful of their need for more support from specific providers. Future research into the necessity of structural needs assessment among cancer patients in general practice is warranted., (© The Author(s) 2019. Published by Oxford University Press.)

Background: Understanding representations of disease in various art genres provides insights into how patients and health care providers view the diseases. It can also be used to enhance patient care and stimulate patient self-management., Methods: This paper reviews how cardiovascular diseases are represented in novels, films, and paintings: myocardial infarction, aneurysm, hypertension, stroke, heart transplantation, Marfan's disease, congestive heart failure. Various search systems and definitions were used to help identify sources of representations of different cardiovascular diseases. The representations of the different diseases were considered separately. The Common Sense Model was used a theoretical model to outline illness perceptions and self-management in the various identified novels, films, and paintings., Results: Myocardial infarction followed by stroke were the most frequently detailed diseases in all three art genres. This reflects their higher prevalence. Representations ranged from biomedical details through to social and psychological consequences of the diseases., Conclusions: Artistic representations of cardiovascular diseases reflect cognitions, emotions, and images of prevalent disease. These representations shape views and behaviour of ill and healthy persons regarding heart diseases. As these representations are amenable to change, they deserve further research, which may be instrumental in improving the quality of life of persons struck by cardiovascular diseases. Changing illness perceptions appears to be a method to improve self-management and thereby quality of life in patients with various cardiovascular diseases.

Recent research has examined patients' drawings of their illness as a means to identify patients' illness representations. The aim of this systematic review was to examine which representations are evident in patients' drawings, and whether drawing assessments are associated with patient outcomes. Ten electronic databases were searched for published journal papers in English up to 1 July 2017. Narrative synthesis summarised findings by participant characteristics, study design, illness representations, and associations with outcomes. There were 101 eligible studies, published across 29 different countries, with 27 different disease categories; 54 of the studies were with adults and 80 were cross-sectional. All core illness perception domains were evident; the most common being identity and related concepts (including symptoms, anatomy, pathophysiology), and emotional representations (including fear, denial, stigma). Perceptions of treatment and the clinical and social environment were evident. More organ damage drawn and larger drawing size were associated with worse perceptions and health outcomes, and drawings distinguished between patient groups. Limitations include the inability to conduct meta-analysis. In conclusion, patients' drawings reveal additional domains of illness representations, specifically perceptions of pathophysiology, treatment and social environments, as well as illness pre-occupation. These findings expand theories of self-regulation and suggest image-based intervention strategies.

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.

The 10-item Perceived Efficacy in Patient-Physician Interactions (PEPPI-10) questionnaire was used as an indirect measure of the patients' perception of the strength of their therapeutic connection with their physician. The English version of the PEPPI-10 could serve as a valuable research tool for analyzing the relationship between patient and physician. The incidence of breast cancer is amongst the highest in Japan, and Patient Reported Outcome is often used as an outcome measure for breast cancer. It is particularly important to establish a strong patient-physician interaction for patients with breast cancer, since these patients require long-term treatment. We designed the present study to assess the reliability and validity of the Japanese version of the PEPPI-10 in female Japanese breast cancer outpatients. A cross-sectional study was performed at the Saitama Cancer Center, Japan. From August 2014 to August 2015, the Japanese versions of the PEPPI-10 that measure patient-perceived self-efficacy and the Brief Illness Perception Questionnaire (BIPQ) that measure illness perception were used for 92 breast cancer patients who received outpatient chemotherapy (mean age: 52.9 years, Cancer Stage I or Stage II : 82.6%, receiving adjuvant chemotherapy: 69.6%). We found that the Japanese version of the PEPPI-10 scale had a high coefficient of internal consistency (Cronbach's α coefficient, 0.83) for reliability, and concurrent validity analysis indicated that the utility of PEPPI-10 was moderately correlated with that of the BIPQ. In conclusion, the Japanese version of the PEPPI-10 is a useful tool that can empower breast cancer outpatients during the course of their treatment.

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

Not all physicians readily discuss death with their terminal patients. To explore whether physicians discuss dying with their terminal patients and to pursue an in-depth understanding of patients' perceptions of death, we interviewed terminal cancer patients in a Dutch hospice and compared their stories to quotes from two autobiographies on dying from cancer, Christopher Hitchens' Mortality and Anatole Broyard's Intoxicated by my illness. This narrative medicine study could potentially teach physicians they should discuss impending death to prevent the use of an invasive medical treatment that typically extends the quantity, but not the quality, of life.

Objective: To describe the illness perceptions (IP) of stroke patients in the first year post stroke; to identify patient clusters with comparable IP trajectories and determine their associations with health., Methods: This prospective study included consecutive stroke patients after medical rehabilitation. Three and 12 months post stroke they completed the Brief Illness Perception Questionnaire (B-IPQ) and questionnaires on physical and mental health. All eight IP and their changes over time were described. Clusters of patients with comparable IP trajectories were constructed by k-means clustering, with subsequent comparison of patient characteristics. Multivariable logistic regression analyses were conducted to determine the association between IP clusters and 12-month mental health., Results: Hundred-and-eighty-four patients were included (men n = 107 [58.2%]; mean age 61.1 [SD 12.7] years). At 3 months, the scores of the IP coherence (mean 3.0, SD 2.3) and treatment control (mean 3.2, SD 2.5) were lowest (best), and consequences (mean 6.1, SD 2.8) and anticipated timeline (mean 6.0, SD 2.7) were highest (worst). At 12 months, the timeline and treatment control scores had significantly worsened. Three clusters of the trajectories of IP were identified, and designated as 'favourable', 'average', and 'unfavourable'. The unfavourable cluster was significantly associated with worse physical and mental health at 3 months (unadjusted) and depressive symptoms at 12 months., Conclusion: Stroke patients' IP partly changed between 3 and 12 months post stroke. Patients with an unfavourable IP trajectory had a higher chance of depressive symptoms at 12 months. Illness perceptions could be considered as an additional target of treatment., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Objective: To investigate the association between illness perceptions and disability both cross-sectionally and over 2 years in patients with hand OA., Methods: Illness perceptions and self-reported disability were assessed at baseline and after 2 years in 384 patients with primary hand OA (mean age 61 years, 84% women, n = 312 with follow-up) with the Illness Perception Questionnaire - Revised (IPQ-R), Functional Index for Hand OA, Australian/Canadian Hand OA Index and HAQ. Risk ratios for high disability (highest quartile) at both time points were estimated for tertiles of IPQ-R dimensions, using Poisson regression. The mean IPQ dimension change difference between patients with and without disability progression (change Functional Index for Hand OA ⩾ 1, Australian/Canadian Hand OA Index > 1.4, HAQ > 0.22) was estimated with linear regression. Analyses were adjusted for age, Doyle index and baseline score., Results: At baseline, stronger negative illness perceptions were associated with high disability. Baseline illness perceptions were also associated with high disability after 2 years, although adjustment made apparent that these associations were confounded by baseline disability status. Most illness perceptions changed over 2 years; understanding increased, OA was regarded as more chronic and fewer emotions and consequences and less personal and treatment control were experienced. The 2 year change in disability was different between patients with and without progression for the illness perceptions of more perceived consequences, symptoms, treatment control and emotions., Conclusion: Illness perceptions seemed to be implicated in disability and its progression. Our results suggest that interventions could focus on improving baseline disability, potentially using illness perceptions to accomplish this goal.

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., (© 2018 The Authors. Arthritis Care & Research published by Wiley Periodicals, Inc. on behalf of American College of Rheumatology.)

Impairments in quality of life (QoL) have been reported in patients with fibrous dysplasia (FD). Here, we examine coping strategies in FD and assess whether these coping strategies are associated with QoL and disease severity. Ninety-two patients (66% females) filled out the Utrecht Coping List (UCL), Short Form-36, and the Brief Pain Inventory (BPI). Coping strategies of patients with FD were compared with reference data from a random sample of Dutch women and patients with chronic pain. Compared to healthy adults, patients expressed more emotions (p < 0.01). Compared to patients with chronic pain, patients with FD used more active coping strategies (p < 0.001), and sought more distraction (p = 0.01) and more social support (p < 0.001). Using more passive coping strategies was associated with more impairment in social function, physical role, mental health, vitality (all p < 0.001), and general health (p < 0.01). Using more avoidant coping strategies was associated with worse mental health and less vitality (both p < 0.01). More expression of emotions was associated with worse mental health (p < 0.01). Type and clinical severity of FD were not associated with coping behavior. Patients with FD have different coping strategies compared to random Dutch reference populations with or without pain. In FD, using more passive coping strategies was associated with more impairment in several aspects of QoL. There was no relationship between coping behavior and clinical characteristics, pointing to biomedical variables not determining the way patients cope with their illness. Recognition of less effective coping strategies can be helpful in the understanding and adaptation of these coping strategies, improving personalized clinical care, with the ultimate goal to improve QoL in patients with FD.

Purpose: We studied how lung cancer is represented in five art genres: novels, poems, films, music, and paintings, in order to put lung cancer in a biopsychosocial perspective. The Common Sense Model is the theoretical basis: illness perceptions regarding lung cancer are examined in exemplars of the art genres., Methods: Literature searches, websites, and personal files formed the database. They produced a fairly limited number of novels, poems, films, music pieces, and paintings with lung cancer as core element., Results: A resigned, rather depressive response associated with great emotional turmoil to the diagnosis of lung cancer, its treatment and dismal outcome, figure rather prominently in the identified sources., Conclusions: Living with lung cancer is scarcely portrayed in novels, poems, film, music, and paintings. When portrayed, a depressive and resigned attitude colors the illness perceptions. Elements from the Medical Humanities (e.g., expressive writing, photovoice, painting) deserve further study in order to examine whether they help improve the quality of life of patients with lung cancer.

Objectives: Arthropathies are a common extraintestinal manifestation (EIM) in inflammatory bowel disease (IBD). This study evaluated the differences in illness perceptions, coping strategies, and illness outcomes between patients with IBD with and without arthropathies at baseline and examined changes at 12 months in these variables in patients with arthropathies., Methods: In total, 204 patients with (n=123) and without (n=81) arthropathies completed questionnaires at baseline and after 1 year, assessing illness perceptions, coping strategies, quality of life, and work and activity impairment. A linear regression analysis assessed the effect of arthropathies on these factors compared with patients without arthropathies. A mixed model analysis evaluated changes in illness perceptions, coping strategies, and outcomes in patients with arthropathies over time., Results: Patients with arthropathies had more persistent thoughts on symptomatology and the variability of symptoms, held more negative views on the effects of illness, had heightened emotions that affected daily functioning, and had a poorer understanding of IBD than patients without arthropathies. Patients with arthropathies could more efficiently divert attention, felt more useful to others, and perceived a reduced physical and mental health and an increased activity impairment compared with patients without arthropathies. At follow-up, patients with arthropathies were more sceptical about the effectiveness of medical treatment but were better able to adapt their activities to their complaints compared with baseline., Conclusion: Patients with arthropathies in IBD adopt different illness perceptions and coping strategies and have different outcomes compared with patients without arthropathies, which is important to know when designing behavioral and physical interventions to improve functioning.

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., (Copyright © 2017 Elsevier B.V. All rights reserved.)

Growing evidence suggests that the arts may be useful in health care and in the training of health care professionals. Four art genres - novels, films, paintings and music - are examined for their potential contribution to enhancing patient health and/or making better health care providers. Based on a narrative literature review, we examine the effects of passive (e.g. reading, watching, viewing and listening) and active (e.g. writing, producing, painting and performing) exposure to the four art genres, by both patients and health care providers. Overall, an emerging body of empirical evidence indicates positive effects on psychological and physiological outcome measures in patients and some benefits to medical training. Expressive writing/emotional disclosure, psychoneuroimmunology, Theory of Mind and the Common Sense Model of Self-Regulation are considered as possible theoretical frameworks to help incorporate art genres as sources of inspiration for the further development of health psychology research and clinical applications.

Introduction: A description is given of the quality of life (QOL) of women who were treated with peripartum embolization or hysterectomy for major obstetric hemorrhage (MOH)., Methods: Questionnaires assessing QOL, combined with questionnaires and drawings assessing illness perceptions, were used to compare women with MOH to reference groups provided by the questionnaires., Results: Women who experienced MOH have similar scores on QOL questionnaires compared to reference groups. Women treated with arterial embolization scored better than women treated with hysterectomy. Partners of women with MOH scored better on QOL questionnaires than reference groups. Drawings reflect the major emotional impact of MOH., Discussion: MOH does not seem to have a negative effect on QOL 6-8 years after the event, although drawings and verbalizations indicate major emotional impact. More extensive follow-up is advised for early recognition of the need for psychological help. Women after embolization seem to have better QOL compared to women after hysterectomy.

Fibrous dysplasia (FD) is a rare bone disorder in which normal bone is replaced by fibrous tissue resulting in pain, deformities, pathological fractures or asymptomatic disease. Illness perceptions are patients' cognitions and emotions about their illness and its treatment, which may impact on Quality of Life (QoL). Here, we explore illness perceptions in patients with FD compared to other disorders, identify factors associated with illness perceptions and evaluate their relationship with QoL. Ninety-seven out of 138 eligible patients from the LUMC FD cohort completed the Illness Perception Questionnaire-Revised (IPQ-R) and the Short Form-36 (SF-36). Age, Gender, Skeletal Burden Score (SBS), FGF-23 levels, type of FD and SF-36 scores were analysed for an association with illness perceptions. We observed significant (p < 0.01) differences in patients' illness perceptions between FD subtypes in the domains: identity, timeline acute/chronic and consequences. Patients with craniofacial FD reported to perceive more consequences (p = 0.022). High SBS was associated with perceiving more negative consequences and attributing the cause of FD to psychological factors (p < 0.01), and high FGF-23 levels with attributing more symptoms to the disease and perceiving more consequences (p < 0.01). The IPQ-R domain identity, timeline acute/chronic, timeline cyclical, consequences, emotional representations and treatment control were significantly associated with impairments in QoL. Illness perceptions in patients with FD relate to QoL, differ from those in patients with other disorders, and are associated with disease severity. Identifying and addressing maladaptive illness perceptions may improve quality of life in patients with FD.

Purpose: Cultural differences are hypothesized to influence patients' Quality of Life (QoL) reports. However, there is a lack of empirical cross-cultural studies comparing QoL of patients with cancer. This study aims to compare QoL of women with breast cancer in the Netherlands and Japan, and to investigate the association of QoL with sociodemographic, clinical, and psychological variables (illness perceptions)., Methods: Dutch (n = 116) and Japanese (n = 148) women with early breast cancer undergoing chemotherapy completed the EORTC QLQ-C30 and Brief Illness Perception Questionnaire immediately before their second cycle of chemotherapy., Results: Dutch women reported poorer Physical, Role, Emotional, and Cognitive functioning than Japanese women. Additionally, illness perceptions were significantly different in Japan and the Netherlands, but these did not vary across treatment type. In Japan, QoL of women receiving AC-chemotherapy was better than that of women receiving FEC-chemotherapy, whereas in the Netherlands, QoL did not vary as a function of chemotherapy. Illness perceptions about symptom severity, adverse consequences, and emotional representations were negatively related to most domains of patients' QoL in both countries. Adding illness perceptions as covariates to the ANOVA analyses rendered the effects of country and treatment type on QoL non-significant., Conclusions: Comparing Dutch and Japanese women with early breast cancer revealed important differences in treatment modalities and illness perceptions which both appear to influence QoL. Perceptions about cancer have been found to vary across cultures, and our study suggests that these perceptions should be considered when performing cross-cultural studies focusing on patient-reported outcomes.

Objective Assess quality of life in patients with systemic lupus erythematosus (SLE) presenting with neuropsychiatric symptoms (neuropsychiatric SLE, NPSLE). Methods Quality of life was assessed using the Short-Form 36 item Health Survey (SF-36) in patients visiting the Leiden NPSLE clinic at baseline and at follow-up. SF-36 subscales and summary scores were calculated and compared with quality of life of the general Dutch population and patients with other chronic diseases. Results At baseline, quality of life was assessed in 248 SLE patients, of whom 98 had NPSLE (39.7%). Follow-up data were available for 104 patients (42%), of whom 64 had NPSLE (61.5%). SLE patients presenting neuropsychiatric symptoms showed a significantly reduced quality of life in all subscales of the SF-36. Quality of life at follow-up showed a significant improvement in physical functioning role ( p = 0.001), social functioning ( p = 0.007), vitality ( p = 0.023), mental health ( p = 0.014) and mental component score ( p = 0.042) in patients with neuropsychiatric symptoms not attributed to SLE, but no significant improvement was seen in patients with NPSLE. Conclusion Quality of life is significantly reduced in patients with SLE presenting neuropsychiatric symptoms compared with the general population and patients with other chronic diseases. Quality of life remains considerably impaired at follow-up. Our results illustrate the need for biopsychosocial care in patients with SLE and neuropsychiatric symptoms.

Background Oliver Sacks (1933-2015) published a large number of books on a variety of neurological topics. Of these, numerous copies have been sold and they probably serve as the only or main source of information on neurological diseases for many persons without a medical background. His first book was on migraine and in his subsequent books many descriptions of migraine can be found, mainly those of auras. Methods We explored the descriptions of migraine in Sacks' work in order to evaluate the image of migraine offered to the readers. Conclusion Oliver Sacks gave wonderful descriptions of migraine auras, but hardly any of migraine headache. Furthermore, he described rare auras such as 'amusia' and olfactory auras. Overall, this makes his descriptions of migraine not very useful to serve as medical information for laypersons. Oliver Sacks, however, wrote great literature.

Context: Patients with pituitary disease report impairments in Quality of Life (QoL) despite optimal biomedical care. Until now, the effects of a self-management intervention (SMI) addressing psychological and social issues for these patients and their partners have not been studied., Objective: To examine the effects of a SMI i.e. Patient and Partner Education Programme for Pituitary disease (PPEP-Pituitary)., Design and Subjects: A multicentre randomized controlled trial included 174 patients with pituitary disease, and 63 partners were allocated to either PPEP-Pituitary or a control group. PPEP-Pituitary included eight weekly sessions (90 min). Self-efficacy, bother and needs for support, illness perceptions, coping and QoL were assessed before the intervention (T0), directly after (T1) and after six months (T2). Mood was assessed before and after each session., Results: Patients in PPEP-Pituitary reported improved mood after each session (except for session 1). In partners, mood only improved after the last three sessions. Patients reported higher self-efficacy at T1 ( P  = 0.016) which persisted up to T2 ( P  = 0.033), and less bother by mood problems directly after PPEP-Pituitary ( P  = 0.01), but more bother after six months ( P  = 0.001), although this increase was not different from baseline ( P  = 0.346). Partners in PPEP-Pituitary reported more vitality ( P  = 0.008) which persisted up to T2 ( P  = 0.034). At T2, partners also reported less anxiety and depressive symptoms ( P  ≤ 0.014)., Conclusion: This first study evaluating the effects of a SMI targeting psychosocial issues in patients with pituitary disease and their partners demonstrated promising positive results. Future research should focus on the refinement and implementation of this SMI into clinical practice., (© 2017 European Society of Endocrinology.)

Objective Leprosy has rarely been the subject of health psychology research despite its substantial impact. Our aim was to explore illness perceptions in patients and their health care providers in Surinam. The Common Sense Model (CSM) was the guiding theoretical model. Design Patients with biomedically cured leprosy and their health care providers completed the B-IPQ and took part in semi-structured interviews. The literature on illness perceptions in patients with leprosy was reviewed. Main outcome measures Patients' B-IPQ scores were compared with samples of patients with other (chronic) illnesses, and with health care providers completing the questionnaire as if they were visibly disfigured patients. Quotations from the semi-structured interviews were used to contextualise the illness perceptions. Results Patients' B-IPQ scores reflected the chronic nature of leprosy and were comparable with those with other chronic illnesses. Health care providers perceived leprosy to have a greater negative impact than did the patients. Perceived understanding of causes differed considerably between patients and health care providers. Conclusion Leprosy continues to be experienced as an illness with major psychological and social consequences such as stigmatisation, even after biomedical cure. Interventions that target patients, health care providers, and society at large may help reduce perceived shame and stigma. The CSM is a helpful theoretical model in studying this population.

Background: Perioperative autologous blood salvage and preoperative erythropoietin are not (cost) effective to reduce allogeneic transfusion in primary hip and knee arthroplasty, but are still used. This study aimed to evaluate the effectiveness of a theoretically informed multifaceted strategy to de-implement these low-value blood management techniques., Methods: Twenty-one Dutch hospitals participated in this pragmatic cluster-randomized trial. At baseline, data were gathered for 924 patients from 10 intervention and 1040 patients from 11 control hospitals undergoing hip or knee arthroplasty. The intervention included a multifaceted de-implementation strategy which consisted of interactive education, feedback on blood management performance, and a comparison with benchmark hospitals, aimed at orthopedic surgeons and anesthesiologists. After the intervention, data were gathered for 997 patients from the intervention and 1096 patients from the control hospitals. The randomization outcome was revealed after the baseline measurement. Primary outcomes were use of blood salvage and erythropoietin. Secondary outcomes included postoperative hemoglobin, length of stay, allogeneic transfusions, and use of local infiltration analgesia (LIA) and tranexamic acid (TXA)., Results: The use of blood salvage (OR 0.08, 95% CI 0.02 to 0.30) and erythropoietin (OR 0.30, 95% CI 0.09 to 0.97) reduced significantly over time, but did not differ between intervention and control hospitals (blood salvage OR 1.74 95% CI 0.27 to 11.39, erythropoietin OR 1.33, 95% CI 0.26 to 6.84). Postoperative hemoglobin levels were significantly higher (β 0.21, 95% CI 0.08 to 0.34) and length of stay shorter (β -0.36, 95% CI -0.64 to -0.09) in hospitals receiving the multifaceted strategy, compared with control hospitals and after adjustment for baseline. Transfusions did not differ between the intervention and control hospitals (OR 1.06, 95% CI 0.63 to 1.78). Both LIA (OR 0.0, 95% CI 0.0 to 0.0) and TXA (OR 0.3, 95% CI 0.2 to 0.5) were significantly associated with the reduction in blood salvage over time., Conclusions: Blood salvage and erythropoietin use reduced over time, but not differently between intervention and control hospitals. The reduction in blood salvage was associated with increased use of local infiltration analgesia and tranexamic acid, suggesting that de-implementation is assisted by the substitution of techniques. The reduction in blood salvage and erythropoietin did not lead to a deterioration in patient-related secondary outcomes., Trial Registration: www.trialregister.nl, NTR4044.

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

Background: Fibrous dysplasia is a rare bone disorder, commonly associated with pain, deformity and fractures, which may significantly impact on quality of life. In this study we evaluate quality of life in patients with fibrous dysplasia using the Short Form-36 and the Brief Pain Inventory questionnaires. Data were compared with those of the general Dutch population., Results: Out of 138 patients from a cohort of 255 patients with fibrous dysplasia that were sent questionnaires assessing quality of life and pain, the response rate was 70.3%, with 97 patients, predominantly female (65%), completing the questionnaires. Monostotic fibrous dysplasia was predominant (n = 62, 64%). Fibrous dysplasia patients had significantly lower quality of life outcome scores than the general Dutch population for all tested domains of the Short Form-36 except for the "Mental health" and the "Role emotional" domains. More severe forms of fibrous dysplasia, had the more severe Short-Form-36 quality of life outcomes, but there was no significant difference in Brief Pain Inventory domains between different subtypes of fibrous dysplasia. Quality of life was lower in patients with higher disease burden, as reflected by high skeletal burden scores (p = 0.003) and high levels of P1NP (p = 0.002)., Conclusion: We demonstrate impairments in all domains of quality of life, except for 'Mental health' and 'Role emotional' domains, across the wide spectrum of fibrous dysplasia including its milder forms. We identified high skeletal burden scores, reflecting disease severity, as the most consistent predictor of impaired quality of life. Our findings hold significant clinical implications as they draw attention to the clinically unmet need to address quality of life issues in the management of patients with all subtypes of fibrous dysplasia, including its milder forms.

Purpose: Patients with inflammatory bowel disease (IBD) often experience severe impairment in different life domains. Psychological factors, such as illness perceptions and coping, may play a role in the adjustment to IBD as indicated by mental and physical health, activity, and work impairment. The present study aimed at examining the assumption of the Common Sense Model (CSM) that coping mediates the relationship between illness perceptions and adjustment in patients with IBD., Method: In a cross-sectional design, 211 IBD patients (73 % Crohn's disease, 40 % male, mean age 42.9 ± 12.9 years) attending an outpatient clinic completed questionnaires assessing illness perceptions (IPQ-R), coping (CORS), mental and physical health (SF-36), as well as activity and work impairment (WPAI). Multiple mediation analyses were applied that allow estimating the total and direct effects of all illness perception dimensions and the indirect effects through all coping strategies on the illness outcomes simultaneously., Results: The analyses yielded significant direct effects of perceptions regarding the cyclical course, the chronic course, the severity of the consequences, the comprehensibility, and the emotional impact of IBD on study outcomes. Additionally, significant indirect effects were found for the perceptions regarding the severity of the consequences, the possibility of personal control, and the comprehensibility of IBD on mental and physical health as well as activity impairment through the use of one specific coping strategy, i.e., reduction of activity., Conclusion: The results provide evidence for the assumptions of the CSM and suggest the importance of addressing illness perceptions and activity stimulation in quality health care for IBD patients.

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

Purpose: Cancer survivors construct perceptions of illness as a (mal)adaptive mechanism. These perceptions motivate/drive subsequent self-management behaviors toward symptoms and treatment that influence health outcomes. Negative illness perceptions have been associated with increased mortality in other chronically ill groups. However, this association is under-researched in cancer survivors. We aimed to explore the association between illness perceptions and mortality in stage I-III progression-free colorectal cancer (CRC) survivors., Methods: We used data from the population-based Patient Reported Outcomes Following Initial treatment and Long Term Evaluation of Survivorship (PROFILES) registry of two CRC survivorship studies conducted in 2009 and 2010. We accessed clinical data from the Netherlands Cancer Registry, and mortality data from municipal personal records database. Follow-up was until 31 December 2014. Survivors (n = 1552) completed the Brief Illness Perception Questionnaire. Cox proportional hazard models estimated the association between illness perceptions and mortality., Results: Negative illness perceptions on consequences (adjusted hazard ratio (HRadj) 1.60, 95 % confidence interval (CI) 1.14-2.25) and emotion (HRadj 1.65, 95 % CI 1.18-2.31) were associated with higher mortality, after adjusting for demographic, clinical, and lifestyle factors. Smoking and inadequate physical activity were independently associated with mortality for all Brief Illness Perception Questionnaire (BIPQ) dimensions., Conclusions: Survivors' perceptions of their illness are important as these perceptions may influence health outcomes during survivorship period. Clinical practice needs to identify and address maladaptive illness perceptions to support more adaptive self-management behaviors and enhance survivorship., Implications for Cancer Survivors: Cancer survivors may benefit from interventions that address potentially maladaptive perceptions and encourage more adaptive self-management behaviors., Competing Interests: All authors declare no conflict of interest. Funding The present research is supported in part by a Social Psychology Fellowship from the Dutch Cancer Society to Melissa Thong (SJ401004) and a Cancer Research Award from the Dutch Cancer Society (#UVT-2009-4349) to Lonneke van de Poll-Franse. Data collection for this study was funded by the Netherlands Comprehensive Cancer Organisation, Eindhoven, Netherlands; the Center of Research on Psychology in Somatic diseases (CoRPS), Tilburg University, Netherlands; and an investment subsidy (#480-08-009) of the Netherlands Organization for Scientific Research (The Hague, Netherlands). The funding sources were neither involved in the collection, interpretation, and analysis of the data, nor in the decision for the writing and submission of this report for publication. Ethical approval All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. Informed consent Informed consent was obtained from all individual participants included in the study.

Purpose: Patients with breast cancer may develop dental problems due to treatment. We examined the prevalence of their dental care use and needs, compared the prevalence of use with that of the general population, and examined which factors predict patients' dental care use., Methods: Patients with primary breast cancer completed a questionnaire at 6 and 15 months post-diagnosis. Medical data were retrieved from medical records. The prevalence of dental care use and needs was examined with descriptive analyses. Associations between predictors and dental care use were examined with multivariate analyses., Results: Twenty-one percent of 746 participants visited their dentist at least once in the past three months at 6 months, and 23% at 15 months post-diagnosis. The estimated percentage of women with at least one contact with their dentist in 12 months was low compared to the general female population (31.9% versus 79.5%). One to two percent of the respondents wanted more contact. Having dental care insurance (odds ratio 1.80; 95% CI, 1.08-3.00), chemotherapy (odds ratio 1.93; 95% CI, 1.21-3.06), and clinical distress 6 months post-diagnosis (odds ratio 2.53; 95% CI, 1.70-3.79) predicted use of dental care 9 months later., Conclusions: Up to 15 months post-diagnosis, breast cancer patients' dental care use is lower than warranted. Oncologists and cancer nurses are recommended to inform patients about dental risks, and to encourage them - particularly those without insurance - to visit their dentist. Occurrence of dental problems should be monitored, especially in patients who receive chemotherapy or who are clinically distressed., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

To date, little is known about enduring clinical distress as measured with the commonly used distress thermometer. We therefore used the distress thermometer to examine: (a) the prevalence of enduring clinical distress, distress-related problems, and subsequent wish for referral of women with breast cancer, and (b) sociodemographic, clinical, and psychosocial predictors of enduring clinical distress. The study had a multicenter, prospective, observational design. Patients with primary breast cancer completed a questionnaire at 6 and 15 months postdiagnosis. Medical data were retrieved from chart reviews. Enduring clinical distress was defined as heightened distress levels over time. The prevalence of enduring clinical distress, problems, and wish for referral was examined with descriptive analyses. Associations between predictors and enduring clinical distress were examined with multivariate analyses. One hundred sixty-four of 746 patients (22 %) reported having enduring clinical distress at 6 and 15 months postdiagnosis. Of these, 10 % wanted to be referred for care. Fatigue was the most frequently reported problem by patients with and without clinical distress, at both time points. Lack of muscle strength (OR = 1.82, 95 % CI 1.12-2.98), experience of a low level of life satisfaction (OR = 0.77, 95 % CI 0.67-0.89), more frequent cancer worry (OR = 1.40, 95 % CI 1.05-1.89), and neuroticism (OR = 1.09, 95 % CI 1.00-1.18) were predictors of enduring clinical distress. In conclusion, one in five women with breast cancer develops enduring clinical distress. Oncologists, nurse practitioners, and cancer nurses are advised to use single-item questions about distress and distress-related problems to ensure timely detection of high-risk patients. Providers should also routinely assess fatigue and its causes, as fatigue is the most frequently reported distress-related problem over time.