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M Voorhaar,1 J Tiemensma,2 GM Asijee,1 AHM Slok,1 JWM Muris,1 AA Kaptein3 1Department of Family Medicine, Maastricht University, CAPHRI Care and Public Health Research Institute, Maastricht, the Netherlands; 2Department of Anesthesiology, Erasmus University Medical Center, Rotterdam, the Netherlands; 3Department of Medical Psychology, Leiden University Medical Centre, Leiden, the NetherlandsCorrespondence: M Voorhaar Email m.voorhaar@maastrichtuniversity.nlIntroduction: Self-management (SM) is a core component of well-being and perceived health for patients with chronic obstructive pulmonary disease (COPD). Most theories on SM share that self-efficacy, illness-perception and coping are determinants of SM behavior. Optimal support to improve SM should be tailored to the individual patient’s level of these determinants as SM abilities vary between patients. To tailor SM support, it is therefore necessary to assess the scores on these determinants. Unfortunately, no such instrument exists for clinical use. Therefore, the first goal of this study was to verify presumed correlations between SM and the determinants thereof. The second goal was to develop an instrument to assess the SM abilities.Methods: In this cross-sectional, observational study, COPD patients completed the General Self-Efficacy Scale (GSES), Brief Illness Perception Questionnaire (B-IPQ) and the Utrecht Proactive Coping Competence measure (UPCC) as well as the Self-Management Ability Scale (SMAS-30). Correlations between the questionnaires were assessed and a principal component analysis (PCA) was performed to identify the best-fitting items in the three independent variables related to SM. These items were used to create an instrument to assess SM abilities.Results: Hundred COPD patients (58 males, 41 females, 1 unknown) were included. The correlation between SM and self-efficacy, illness perception on concerns and proactive coping was moderate and significant (r=0.318, p< 0.01; r=− .230, p< 0.05; r=.426, p< 0.01, respectively). PCA identified six UPCC items and nine GSES items that met the predefined criteria. These items were supplemented with the B-IPQ concerns item to establish the new instrument to assess SM abilities.Keywords: self-management, validation, patient-reported outcome, chronic disease, personalized medicine

Manja Vollmann,1 Ayako Matsuda,2 Judith R Kroep,3 Kunihiko Kobayashi,4 Kaoru Kubota,5 Kenichi Inoue,6 Kazue Yamaoka,7 Hein Putter,8 Rajen Ramai,9 Johannes WR Nortier,3 Maarten J Fischer,10 Ad A Kaptein10 1Socio-Medical Sciences ESHPM, Erasmus University Rotterdam, Rotterdam, the Netherlands; 2Department of Hygiene and Public Health, Teikyo University School of Medicine, Tokyo, Japan; 3Medical Oncology, Leiden University Medical Center, Leiden, the Netherlands; 4Saitama International Medical Center Saitama, Saitama, Japan; 5Nippon Medical School Hospital, Tokyo, Japan; 6Saitama Cancer Center, Saitama, Japan; 7Teikyo University Graduate School of Public Health, Tokyo, Japan; 8Medical Statistics and Bioinformatics, Leiden University Medical Center, Leiden, the Netherlands; 9Respiratory Medicine, Leiden University Medical Centre, Leiden, the Netherlands; 10Medical Psychology, Leiden University Medical Center, Leiden, the NetherlandsCorrespondence: Ad A KapteinDepartment of Medical Psychology, Leiden University Medical Center, PO Box 9600, Leiden 2300 RC, the NetherlandsEmail a.a.kaptein@lumc.nlPurpose: Examine illness perceptions, functional health and quality of life of lung cancer patients throughout chemotherapy treatment.Patients and Methods: Longitudinal design with baseline measure 12 days after the first chemotherapy and follow-up measure 3 months later, where illness perceptions (BIPQ), functional health, and quality of life (EORTC QLQ-C-30) were measured. A total of 21 patients with non-small-cell lung cancer took part. Non-parametric testing was performed given the pilot nature of the study and the associated relatively small sample size.Results: Small to medium changes in illness perceptions and functional health between the two measurement points were detected, with both becoming more positive. More negative illness perceptions at the beginning of the treatment were associated with less functioning and lower quality of life at both beginning and end of treatment.Conclusion: Addressing illness perceptions seems a clinically relevant approach in improving functioning and quality of life of patients with non-small-cell lung cancer.Keywords: lung cancer, illness perceptions, quality of life, longitudinal design, patient reported outcomes

Ad A Kaptein,1 Jitske Tiemensma,2 Elizabeth Broadbent,3 Guus M Asijee,4,5 Maarten Voorhaar4,5 1Medical Psychology, Leiden University Medical Centre (LUMC), Leiden, the Netherlands; 2Psychological Sciences, University of California, Merced, CA, USA; 3Psychology Department, Auckland University Medical School, Auckland, New Zealand; 4CAPHRI School for Public Health and Primary Care, Maastricht University, Maastricht, the Netherlands; 5Boehringer Ingelheim Pharma GmbH & Co. KG, Ingelheim am Rhein, Germany Background: Given the increasing importance of patient-reported outcomes (PRO) in quality medical care, we examined the value and feasibility of an innovative method for assessing patients’ illness perceptions, represented in drawings made by patients with COPD of their lungs. Aim: The aim of our study was: to study patients’ representation of COPD as reflected in their drawings of their lungs; and to examine scores on a validated measure that assesses illness perceptions (ie, Brief Illness Perception Questionnaire [B-IPQ]). Patients and methods: One hundred outpatients with COPD, mean age 70 years, selected from a pharmacy database, participated and 98 filled out the B-IPQ. Eighty-seven patients completed the drawing task. Results: The illness perceptions as reflected in the responses to the B-IPQ scales represented a quite optimistic view of COPD and its consequences. The drawings of the lungs reflected a considerable discordance between patients’ representations and medically accepted representations of lungs of a person with COPD. Conclusion: Assessing illness perceptions in clinical care and research about COPD offers opportunities to identify goals for patient education and self-management. Inviting patients to draw their illness is an innovative and promising approach to assessing PRO. Keywords: COPD, drawings, illness perceptions, PRO, quality of life, self-management

Richelle C Kosse,1 Marcel L Bouvy,1 Tjalling W de Vries,2 Ad A Kaptein,3 Harm CJ Geers,1 Liset van Dijk,4 Ellen S Koster1 1Division of Pharmacoepidemiology and Clinical Pharmacology, Utrecht Institute for Pharmaceutical Sciences, Faculty of Science, Utrecht University, Utrecht, 2Department of Paediatrics, Medical Center Leeuwarden, Leeuwarden, 3Medical Psychology, Leiden University Medical Center, Leiden, 4NIVEL, the Netherlands Institute for Health Services Research, Utrecht, the Netherlands Purpose: Poor medication adherence in adolescents with asthma results in poorly controlled disease and increased morbidity. The aim of the ADolescent Adherence Patient Tool (ADAPT) study is to develop an mHealth intervention to support self-management and to evaluate the effectiveness in improving medication adherence and asthma control. Intervention: The ADAPT intervention consists of an interactive smartphone application (app) connected to a desktop application for health care providers, in this study, the community pharmacist. The app contains several functions to improve adherence as follows: 1) a questionnaire function to rate asthma symptoms and monitor these over time; 2) short movie clips with medication and disease information; 3) a medication reminder; 4) a chat function with peers; and 5) a chat function with the pharmacist. The pharmacist receives data from the patient’s app through the desktop application, which enables the pharmacist to send information and feedback to the patient. Study design: The ADAPT intervention is tested in a community pharmacy-based cluster randomized controlled trial in the Netherlands, aiming to include 352 adolescents with asthma. The main outcome is adherence, measured by patient’s self-report and refill adherence calculated from pharmacy dispensing records. In addition, asthma control, illness perceptions, medication beliefs, and asthma-related quality of life are measured. Conclusion: This study will provide in-depth knowledge on the effectiveness of an mHealth intervention to support asthma self-management in adolescents. These insights will also be useful for adolescents with other chronic diseases. Keywords: adherence, adolescents, asthma, intervention, mHealth, pharmacist

Jitske Tiemensma,1 Erin Gaab,2 Maarten Voorhaar,3,4 Guus Asijee,3,5 Adrian A Kaptein6 1Psychological Sciences, 2Health Sciences Research Institute, University of California, Merced, CA, USA; 3Department of Family Medicine, Maastricht University, Care and Public Health Research Institute School for Public Health and Primary Care, Maastricht, the Netherlands; 4Boehringer Ingelheim, Alkmaar, the Netherlands; 5Boehringer Ingelheim, Amsterdam, the Netherlands; 6Department of Medical Psychology, Leiden University Medical Centre, Leiden, the Netherlands Background: A key goal of chronic obstructive pulmonary disease (COPD) care is to improve patients’ quality of life (QoL). For outcomes such as QoL, illness perceptions and coping are important determinants.Aim: The primary aim was to assess the associations between illness perceptions, coping and QoL in COPD patients. A secondary aim was to compare illness perceptions and coping of patients with reference values derived from the literature.Patients and methods: A total of 100 patients were included in the study. Patients were asked to complete the Brief Illness Perception Questionnaire (B-IPQ), the Utrecht Proactive Coping Competence scale (UPCC), and a QoL item. Correlations and linear regression models were used to analyze the data. Student’s t-tests were used to compare patients with COPD with reference values derived from the literature.Results: Patients with better understanding of COPD utilized more proactive coping strategies (P=0.04). A more intense emotional response to COPD was related to less proactive coping (P=0.02). Patients who reported using more proactive coping techniques also reported to have a better QoL (P

Ad A Kaptein, Maarten J Fischer, Margreet Scharloo Medical Psychology Section, Leiden University Medical Centre (LUMC), Leiden, the Netherlands Abstract: In this narrative review, we put self-management in the context of a 50-year history of research about how patients with COPD respond to their illness. We review a definition of self-management, and emphasize that self-management should be combined with disease management and the chronic care model in order to be effective. Reviewing the empirical status of self-management in COPD, we conclude that self-management is part and parcel of modern, patient-oriented biopsychosocial care. In pulmonary rehabilitation programs, self-management is instrumental in improving patients’ functional status and quality of life. We conclude by emphasizing how studying the way persons with COPD make sense of their illness helps in refining self-management, and thereby patient-reported outcomes in COPD. Keywords: chronic obstructive pulmonary disease, self-management, psychology, quality of life, biopsychosocial model, medical humanities

Ad A Kaptein Medical Psychology Section, Leiden University Medical Centre, Leiden, Netherlands Background: Administering growth-hormone therapy (GHT) is a long-term treatment, associated with avoidance and phobic behaviors in the children involved. The current study examined GHT users’ perceptions of a new needle-free device (ZomaJet Vision X [10 mg/mL]) with a lower injection volume compared to the traditional device. Methods: A total of 73 persons participated (mean age ± standard deviation, 10.10 ± 3.60 years) in a longitudinal design. Users’ views were studied 4 weeks after having applied both the old and the new device for a period of at least 4 weeks. Satisfaction, ease and frequency of restitution, local sensations, bruises during administering GHT, affective response to local sensations, and subject preference were assessed on the basis of the users’ responses. Results: Subjects’ satisfaction with the new device was equal compared with the previous device for the total group of 73 children. However, the subgroup of 59 children who proved tolerant to meta-cresol (new preservative for Vision X only) reported a significantly higher satisfaction rating with the new device compared to the old device (7.7 vs 6.6, P=0.0002). Vision X was evaluated as better on ease and frequency of restitution and the number of bruises. Pain sensations did not differ meaningfully between the two devices. The new device was favored over the previous one in a majority of respondents. Vision X allows easy reconstitution of the solution, which was reflected in the percentage of young children able to prepare transjections themselves being more than doubled, illustrating the greater sense of empowerment in these users. Self-reported adherence to the therapy was good (less than 10% of injections missed) with both devices. Conclusion: The new device ZomaJet Vision X appears to be evaluated more positively than the previous version on criteria that reflect users’ preferences. Keywords: invasive medical procedures, growth-hormone therapy, patient perception, transjection, children

Nadine van Dongen,1 Ad A Kaptein21Patient Intelligence Panel Health Ltd, London, United Kingdom; 2Section Medical Psychology, Leiden University Medical Centre, Leiden, The NetherlandsBackground: We evaluated the opinions of parents in The Netherlands concerning treatment of their children with growth hormone, and examined beliefs and perceptions about treatment and quality of health care communication and support.Methods: An Internet survey was completed by 69 parents who had children prescribed growth hormone and were part of the Patient Intelligence Panel. Acceptance of the diagnosis and treatment was investigated with reference to four topics, ie, search and quality of information, involvement in decision-making process, operational aspects, and emotional problems and support.Results: Among the parents surveyed, 48% reported a lack of freedom to choose the type of growth hormone device that best suited their needs, 92% believed that their children (and they themselves) would benefit if the children self-administered growth hormone, and 65% believed training to support self-administration would be helpful. According to 79%, the availability of support from another parent with experience of treating their own child with growth hormone, alongside their doctor, would be valuable. Thirty-seven percent of the parents indicated that their children felt anxious about administration of growth hormone, and 83% of parents would appreciate psychological support to overcome their anxiety. An increase in reluctance to receive treatment with growth hormone was observed by 40% of parents after the children reached puberty, and 57% of these parents would appreciate psychological support to overcome this reluctance.Conclusion: Understanding how growth hormone treatments and their implications are perceived by parents is a first step towards addressing quality of growth hormone treatment, which may be instrumental in improving adherence. The data show a need for support and involvement of parents in the process of choosing a growth hormone device. This decision-making process may be instrumental in improving acceptance and diminishing emotional problems for children using growth hormone.Keywords: growth hormone, parents, treatment beliefs, adherence, pediatric chronic disease

Objectives: To evaluate the nature and extent of aesthetic dissatisfaction in patients with hand osteoarthritis (OA), and to investigate its impact on daily life and its determinants.Method: Patients with primary hand OA, consulting secondary care, underwent physical examination for the number of joints with bony joint enlargements, soft tissue swelling and deformities, and radiographs. Questionnaires were filled in to measure pain and function (Functional Index for Hand Osteoarthritis, FIHOA), dissatisfaction with the appearance of the hands and its impact (aesthetic scales from the Michigan Hand Outcomes Questionnaire, MHQ), anxiety and depression (the Hospital Anxiety and Depression Scale, HADS), and illness perceptions (the revised Illness Perception Questionnaire, IPQ-R). Odds ratios (ORs) with 95% confidence intervals (CIs) were calculated using multivariate logistic regression as measures of relative risk for dissatisfaction with appearance or its impact, adjusted for age, sex, body mass index (BMI), and joint-specific abnormalities (bony joint enlargements, deformities, or radiographic severity), self-reported pain and function.Results: Of 247 patients (mean age 61.6 years, 88% women), 63 (26%) were aesthetically dissatisfied and 33 (13%) reported impact on daily life due to dissatisfaction. Patients with joint-specific abnormalities were at higher risk for reporting dissatisfaction. Patients who reported impact also reported more depression and negative illness perceptions, independently from joint-specific abnormalities.Conclusions: Hand OA patients report aesthetic dissatisfaction with their hands regularly, especially in those with joint abnormalities. This dissatisfaction has a negative impact in a small group of patients who also reported more depression and negative illness perceptions. These results indicate the influence of psychosocial factors on outcome measures in patients with hand OA. [ABSTRACT FROM AUTHOR]

Background. Athletes have to cope adequately with the consequences of their injury in order to return into sports as soon as possible. Besides the physical characteristics of the injury, illness perceptions and emotional responses impact the behavioural responses to the injury. Purpose. To apply Leventhal's Common Sense Model as a theoretical framework in the field of sports medicine, pertaining to injured athletes. Methods. In a sample of 95 injured athletes participating in different sports, sociodemographic, injury and sport-related characteristics, the Illness Perception Questionnaire-Revised-Sports (IPQ-R-S) and the Profile Of Mood States were assessed. Results. Injured athletes' most experienced symptoms were pain (82%) and loss of strength (50%), associated with a high controllability; they see their injury as not chronic, with minor consequences for daily life and minor emotional consequences. Athletes with an injury of longer duration have minor psychological attributions, 28% suffer from fatigue, which is strongly related to a negative mood state. Conclusions. Illness perceptions and mood states are related to injury characteristics. Clinicians ought to incorporate patients' views about their injuries into their treatment in order to increase the concordance between patient's and clinician's perceptions, thereby increasing chances of a quick and uneventful recovery. [ABSTRACT FROM AUTHOR]

Goals Of Work: This paper presents an observational study of the longitudinal effects of cancer treatment on quality of life (QoL) in patients treated for head and neck squamous cell carcinoma (HNSCC), and evaluated the contribution of patients' baseline illness cognitions to the prediction of QoL 2 years after diagnosis.Patients and Methods: One hundred seventy-seven patients eligible for primary treatment for HNSCC completed the Illness Perception Questionnaire-Revised at baseline and the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire-30 at baseline, at 1-year and 2-year follow-ups.Main Results: Compared to baseline, patients reported better emotional functioning at both follow-ups (p < 0.001), worse social functioning at 12 months (p < 0.05), and better global health status at 24 months (p < 0.05). Patients' own implicit common sense beliefs about their illness added small but significant amounts of variance to the prediction of QoL after 2 years. Less belief in own behavior causing the illness predicted better functioning and better global health. Strong illness identity beliefs predicted worse functioning and worse global health. Negative perceptions about the duration of the illness (chronic timeline beliefs) and more negative perceived consequences also predicted worse QoL.Conclusions: Our results on the negative perceptions about the duration of the illness, perceived consequences, and high symptom awareness predicting worse QoL illustrate the detrimental effects of uncertainty and negative expectations about the future course of the illness. The identification of these cognitive factors provides possible targets for counseling strategies to assist patients in long-term adjustment to HNSCC. [ABSTRACT FROM AUTHOR]

BACKGROUND: Self-rated health (SRH) has been shown to predict mortality in large community-based studies; however, large clinical-based studies of this topic are rare. We assessed whether an SRH item predicts mortality in a large sample of incident dialysis patients beyond sociodemographic, disease, and clinical measures and possible age interaction. STUDY DESIGN: Prospective cohort study. SETTING & PARTICIPANTS: 1,443 predominantly white patients from 38 dialysis centers in The Netherlands participating in the Netherlands Cooperative Study on the Adequacy of Dialysis-2 between 1997 and 2004. PREDICTOR: SRH score completed at 3 months after the start of dialysis therapy (baseline). OUTCOMES & MEASUREMENTS: Cox proportional hazards model estimated the association between SRH and all-cause mortality. Interaction of SRH with age (<65 and >/=65 years) was examined in an additive model. RESULTS: Mean age of patients was 59.6 +/- 14.8 years, with 61% men and 69% married/living together. Mean follow-up was 2.7 +/- 1.8 years. Deaths per SRH group in the multivariate analyses sample: excellent/very good (9 of 63 patients; 14.3%), good (148 of 473 patients; 31.3%), fair (194 of 508 patients; 38.2%), and poor (45 of 71 patients; 63.4%). Patients with poor, fair, or good health ratings had a greater mortality risk than those with excellent/very good health ratings (adjusted hazard ratio [HR(adj)], 3.56; 95% confidence interval [CI], 1.71 to 7.42; HR(adj), 2.09; 95% CI, 1.06 to 4.12; HR(adj), 1.87; 95% CI, 0.95 to 3.70, respectively) independent of a range of risk factors. No age interaction with SRH was found. LIMITATIONS: Although the SRH-mortality association remained strong despite extensive adjustments, unknown residual confounding could still exist. CONCLUSION: SRH is an independent predictor of mortality in incident dialysis patients. Patients with poor SRH in both age strata had a significantly increased risk of mortality even after controlling for demographic and clinical confounders. Patient self-assessment of health can be an invaluable and economical complement to clinical measures in risk assessment. Copyright © 2008 National Kidney Foundation, Inc. [ABSTRACT FROM AUTHOR]

An explanatory framework, referred to as the attitude/social influence/self-efficacy-model (ASE-model), was utilised to explain future self-reported adherence of adolescents to daily inhaled prophylactic asthma medication. The objective was to investigate the long-term influence of these earlier reported cognitive variables and other psychological and medical determinants on self-reported adherence 1 year later. Data were collected, via a questionnaire, from 86 adolescents with asthma (aged 11 through 18 years) recruited from outpatient clinics. Adherence was assessed by asking the patients to give themselves a report mark for adherence. The results of the multiple regression analyses showed that the three major ASE-variables were predictors of self-reported adherence to a moderate degree (R(2)=0.21). Previous self-reported adherence was found to be the best predictor of self-reported adherence to prophylactic asthma medication 1 year later (R(2)=0.45). The results of this study could be useful in the development of interventions to enhance adherence to asthma medication. In future, such interventions should focus on feelings of shame about having asthma and promoting healthy habits, such as adherence to medication. [ABSTRACT FROM AUTHOR]

Chronic illness not only affects the life of those suffering from Huntington's disease but also threatens the quality of life (QOL) of their spouses. In this study, we focus on Huntington's disease (HD). The impact of HD on the QOL of spouses has been hardly studied from a behavioral medicine or health psychology perspective. We hypothesize that spouses' illness perceptions and coping mechanisms will contribute significantly to the prediction of their QOL. Illness perceptions, coping mechanisms, and the QOL of 90 spouses of patients with HD were assessed by means of the Illness Perception Questionnaire, the COPE, and the Medical Outcome Study 36-item Short Form Health Survey, respectively. After controlling for demographic and illness-related variables, coping mechanisms explained a significant amount of variance of spouses' role functioning. Given our results, more empirical and longitudinal research is justified on coping mechanisms and illness perceptions of spouses living with Huntington's disease. [ABSTRACT FROM AUTHOR]

Background: Sternocostoclavicular hyperostosis (SCCH) is a rare, debilitating, chronic inflammatory disorder of the anterior chest wall due to a chronic sterile osteomyelitis of unknown origin. SCCH is largely underdiagnosed and often misdiagnosed. In individual cases it can remain unrecognized for years. The purpose of this study is twofold. Firstly, to evaluate the psychological condition of SCCH patients, both in the sometimes quite extended pre-diagnostic period between first manifestations and confirmed diagnosis of the disease, and in the current situation. Secondly, to investigate the relationships between the pre-diagnostic and the current psychological conditions of confirmed SCCH patients.Methods: Structured interviews were held with 52 confirmed SCCH patients. Questionnaires were included to assess posttraumatic stress symptoms, social support, aspects of pain, illness perceptions, self-reported health status, and quality of life.Results: SCCH patients reported stronger posttraumatic stress symptoms, more unfavorable illness perceptions, lower health status, and poorer quality of life than healthy individuals and patients with other diseases or traumatic experiences. Psychological distress in the pre-diagnostic period was associated with unfavorable conditions in the current situation.Conclusion: SCCH is an illness with serious psychological consequences. Psychological monitoring of patients with unexplained complaints is recommended as long as a diagnosis has not been reached. [ABSTRACT FROM AUTHOR]

To explore "the lived experience" of patients with cancer through narratives, in-depth interviews with 20 patients were conducted in the patients' homes-"at the kitchen table." Interviews were audio-recorded, transcribed, and analyzed following the Linguistic Inquiry and Word Count (LIWC) methodology. Thematic Analysis was used to explore themes in the narratives. Scores on relevant LIWC dimensions of the 20 patients were compared with norm data for respondents without cancer. Patients with cancer scored higher on "anger" and "sadness" (psychologic processes dimension); lower on "insight," "causes," and "tentatives" (cognitive processes dimension); and lower on "religion." Major themes identified from the Thematic Analysis were resilience, fatigue, social relationships, turning inward psychologically, shared decision-making, and psychological support. Narratives of patients with cancer are a source of rich data on how persons with cancer make sense of their illness, its medical management, and its psychological and social consequences. Qualitative methods of data analysis (LIWC; Thematic Analysis) are a highly valuable element in the methodology of exploring patient experience., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2024.)

Research Question: From a value-based healthcare (VBHC) perspective, does an assessment of clinical outcomes and intervention costs indicate that providing cognitive behavioural therapy (CBT) or mindfulness to women seeking fertility treatment add value compared with no such intervention?, Design: Proof-of-concept business case based on a VBHC perspective that considers clinical outcomes and costs. Potential effects on psychological and fertility outcomes were based on existing research. Cost outcomes were estimated with a costing model for the Dutch fertility treatment setting., Results: Thirty-two studies were identified; 13 were included. Women who received CBT had 12% lower anxiety, 40% lower depression and 6% higher fertility quality of life; difference in clinical pregnancy rates was six percentage points (CBT [30.2%]; control [24.2%]); difference in fertility discontinuation rates was 10 percentage points (CBT [5.5%]; control [15.2%]). Women who received training in mindfulness had 8% lower anxiety, 45% lower depression and 21% higher fertility quality of life; difference in mean clinical pregnancy rate was 19 percentage points (mindfulness [44.8%]; control [26.0%]). Potential total cost savings was about €1.2 million per year if CBT was provided and €11 million if mindfulness was provided. Corresponding return on investment for CBT was 30.7%, and for mindfulness 288%. Potential cost benefits are influenced by the assumed clinical pregnancy rates; such data related to mindfulness were limited to one study., Conclusions: The provision of CBT or mindfulness to women seeking fertility treatment could add value. Higher quality primary studies are needed on the effect of mindfulness on clinical pregnancy rates., (Copyright © 2024. Published by Elsevier Ltd.)

Background: Individuals with Parkinson's disease (PD) report a diminished perceived functional autonomy as their condition progresses. For those seeking emergency care, it is unknown whether the patient-physician relationship is instrumental in respecting patient autonomy. This study evaluated patient autonomy ideals in individuals with PD requiring emergency care and the perceived support for autonomy from emergency department physicians., Method: Individuals with PD (n = 36, average age 78.1 years) were surveyed using the Ideal Patient Autonomy questionnaire (IPA) and the Health Care Climate Questionnaire (HCCQ). A multivariable regression analysis assessed whether patients' Hoehn and Yahr stage and IPA questionnaire results predicted HCCQ items., Results: The IPA questionnaire revealed that individuals with PD in need of emergency care emphasize the significance of medical expertise (IPA 'doctor should decide' theme 0.71) in decision-making and their desire to be fully informed about all potential risks (IPA 'obligatory risk information' theme 0.71). The average HCCQ values showed a decreasing trend across Hoehn and Yahr stages 1 to 5: 6.19, 6.03, 5.83, 5.80, and 5.23, respectively. HY scale values also influenced HCCQ items related to the physician's role., Conclusion: In our cohort, individuals with Parkinson's disease tend to rely on medical expertise for decision-making and prioritize complete risk information during emergency care. However, this autonomy support diminishes as functional disability levels increase., (© 2024. The Author(s).)

Parkinson's disease characteristics can create a self-perceived sense of stigmatization and disapproval by others, thereby affecting self-perceived autonomy. This study investigated the metaphors related to the loss of autonomy and stigma in stories and drawings of Parkinson's disease. We compare a contemporary first-person illness narrative and -drawing from a person with Parkinson's disease, with two novels (Jonathan Franzen's The Corrections and Claudia Piñeiro's Elena Knows), a graphic novel (Peter Dunlap-Shohl's My Degeneration: A Journey Through Parkinson's), a non-fiction book (Oliver Sacks' Awakenings) and a first-person illness narrative (John Palfreman's The Bright Side of Parkinson's). Metaphors in the patient narrative, novels, and non-fiction work were reviewed and a list of themes or categorizations common to 2 of the metaphors was generated. Parkinson's disease metaphors indicate a 'Parkinson's prism' thereby depicting extreme experiences (24.4%) like a 'fall by mischance', a 'tantrum of selfish misery' or a 'bottomless darkness and unreality' (Table 1). Both novels signify a sense of 'betrayal and disconnection' in the Parkinson's disease experience while non-fiction of Parkinsonism depicts a space in which one feels 'caged and deprived'. This makes the Parkinson's disease narrative a chaos story that could influence the decision to initiate treatment and treatment adherence. We conclude that narrative medicine can help to focus the medical consultations with affected individuals on issues that matter most to them, thereby improving self-perceived autonomy and stigma. As such, it is a critical component of the much-needed move towards personalized medicine in Parkinson's disease, achieved through the reciprocity of thinking with stories., (© 2023. The Author(s).)

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

Background: Psychology as applied to health and illness has a relatively short history. Nevertheless, that history shows a rapid development of the theoretical models that guide the field over the past 60 years. Core theoretical approaches are concisely reviewed, in the context of Kaplan's paper 'Behavior as the central outcome in health care' (1990), which is used as a model to examine the extent to which these approaches embrace Kaplan's notions., Advances: Empirical studies from the health psychology domain are used, which demonstrate the gains in terms of quality of life and behavioural outcomes in patients with (chronic) somatic diseases. Over a period of some 60 years, theoretical models and core concepts in psychology as applied to health and illness have evolved from psychosomatic views to neuropsychology, quality of life, patient education, self-management, illness perceptions, patient-reported outcome measures (PROMs), shared decision-making (SDM) and health humanities (HH). The more recent models (SDM, HH) appear to align to a considerable degree with adopting 'behavior as the central outcome an outcome in health care'; shared decision-making and health humanities focus on encouraging patients to make sense of and give meaning to their illness in order to attain optimal psychosocial adjustment., Conclusions: In addition to 'behavior as the central outcome in health care', a new definition of the concept of health (i.e. 'the ability to adapt and to self-manage' - Huber et al., 2011) seems to favour patients, healthcare providers, society, and health psychology. Incorporating this concept into medical care may be viewed as a challenge for health psychologists - and as a source of continual struggle with strong biomedical forces., Competing Interests: No potential conflict of interest was reported by the author(s)., (© 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.)