OBJECTIVE:We aimed to assess whether a symptom perception accuracy measure can be derived from routinely collected general population cohort data. METHODS:We combined information on self-reported dyspnea and physiological parameters (FEV1%pred, body weight) from the Lifelines Cohort Study ( N =138,594; 59.0% female; mean age=42.3 years [SD=11.0]) to obtain a symptom perception accuracy measure. Dyspnea was operationalized via the SCL-90 SOM subscale item. Using principal component analysis of available psychosocial variables known to correlate with symptom perception, we derived 3 compound scores reflecting negative affect, fear of illness, and worries of contracting disease. We used multinominal regression analyses to calculate the probability of self-reported dyspnea being correctly classified based on FEV1%pred and body weight. Via multivariable logistic regression we assessed whether the dichotomized probability of correct classification is associated with derived compound scores. RESULTS:The symptom perception accuracy measure was non-normally distributed in control and participants with asthma/COPD. Fear of illness (OR=0.85; 95% CI=0.79-0.90 and OR=0.84; 95% CI=0.72-0.98) was negatively associated with the accuracy measure in control and asthma/COPD participants, respectively. Negative affect (OR=0.76; 95% CI=0.65-0.90) was associated negatively with the accuracy measure in asthma/COPD participants. Worries about contracting disease were associated with the measure in control participants (OR=0.88; 95% CI=0.83-0.94). Physiological parameters explain 1.6% to 2.5% of the variance in self-reported dyspnea; the addition of aforementioned compound scores increases this to 9.5% to 16.6%. CONCLUSIONS:We show that a symptom perception accuracy measure based on congruence between physiological parameters (FEV1%pred, body weight) and self-reported dyspnea can be developed. It is associated with known psychosocial correlates of symptom perception. The psychosocial factors explained more variance in self-reported dyspnea than physiological parameters.
Functional disorders share familial risk with internalizing disorders such as generalized anxiety disorder and depression, and are comorbid with cardiometabolic and immune-related diseases. We investigated whether functional and internalizing disorders co-aggregate with these diseases in families to gain insight into the aetiology of functional and internalizing disorders. We included 166,774 subjects (aged 3–94), from the population-based Lifelines Cohort Study, a Dutch general population cohort. We defined cases for three functional disorders (myalgic encephalomyelitis/chronic fatigue syndrome; ME/CFS, fibromyalgia, and irritable bowel syndrome; IBS), two internalizing disorders (major depressive disorder; MDD and generalized anxiety disorder; GAD), cardiometabolic diseases (obesity, metabolic associated steatotic liver disease, type 2 diabetes, hypertension and cardiovascular disease) and immune-related diseases (composite measures of auto-immune disease and atopy). We used logistic regression to model the prevalence of these disorders in the general population and in participants with affected relatives. Using these prevalence estimates, we assessed familial co-aggregation with (1) recurrence risk ratios (λR), and (2) familial correlations (rf). All functional and internalizing disorders co-aggregated with immune-related diseases (λR range 1.06–1.24). ME/CFS, FM, and MDD co-aggregated with most cardiometabolic diseases (λR range 1.00–1.23). MDD, fibromyalgia, and ME/CFS showed similar familial correlation patterns with both disease groups (rf range 0.12–0.44), while patterns of IBS and GAD were more variable. Internalizing and functional disorders share familial risk with immune-related and cardiometabolic diseases. This suggests that risk factors relevant to immune-related and cardiometabolic diseases may also be relevant for FDs. Future studies should investigate such risk factors to identify novel treatment targets.
Background:Tailoring is an important strategy to improve uptake and efficacy of medical information and guidance provided through eHealth interventions. Given the rapid expansion of eHealth, understanding the design rationale of such tailored interventions is vital for further development of and research into eHealth interventions aimed at improving health and healthy behavior. Objective:This systematic review examines the use of health literacy concepts through tailoring strategies in digital health interventions (eHealth) aimed at improving health and how these elements inform the overall design rationale. Methods:A systematic search of PubMed, PsycINFO, Web of Science, and ACM databases yielded 31 eligible randomized trials that focused on adult health improvement through eHealth interventions. Eligible studies compared tailored versus nontailored eHealth interventions for adults, excluding non-English papers and those addressing solely readability or targeting populations with accessibility barriers. Data extraction focused on study characteristics, health literacy components, tailoring methods, and design rationales, with study quality evaluated using Quality Assessment for Diverse Studies (QuADS) by independent reviewers. Results:Most interventions applied both cognitive and social health literacy concepts and predominantly used content matching as a tailoring strategy. Of all studies using content matching, most used one or more supporting theories as well as end-user data to inform the content matching. While choices for individual intervention components were mostly explicated, detailed descriptions of the design process were scarce, with only a few studies articulating an underlying narrative that integrated the most important chosen components. Conclusions:While tailored eHealth interventions demonstrate promise in enhancing health literacy and the trial design of the interventions overall was of good quality, inconsistent documentation of design rationales impedes replicability and broader application of the used eHealth concepts. This calls for more detailed reporting on the design choices of the intervention in efficacy studies, so that reported outcomes can be easier connected to choices made in the design of the eHealth intervention.
Objectives Functional Disorders (FD) are highly prevalent conditions that are diagnosed based on the presence of specific patterns of somatic symptoms. Examples of FDs include Fibromyalgia and Irritable Bowel Syndrome. Many patients who meet the criteria do not receive a formal diagnostic label. This systematic review aims to assess factors associated with receiving an FD diagnostic label. Methods A systematic search of PubMed, PsycINFO, and Embase was performed following the PRISMA guidelines. All research methodologies and languages were included with a focus on experiences and impacts of receiving/having an FD diagnostic label. Excluded studies were those not mentioning diagnostic labels, only involving single pain symptoms, and studies solely focusing on functional neurological symptoms. Screening, data extraction and quality ratings (using the QuADS instrument) were performed by two independent reviewers. Results 15 Studies were identified (10 quantitative and 5 qualitative). Our results show that female patients were more likely to receive an FD diagnostic label for their symptoms; other associations were less consistent and only found for specific labels or research designs. In general, quality of life and healthcare use did not seem to differ between patients with and without an FD diagnostic label. From the healthcare professional’s perspective there was doubt about giving an FD diagnostic label, mainly due to concerns of harm for patients. Quality of included studies was rated low to moderate. Conclusion Better understanding of factors associated with receiving or having an FD diagnostic label, independently from symptom development can help healthcare professionals make evidence-based decisions in labelling or not; however, high quality studies on this topic are urgently needed.
BACKGROUND:High levels of depressive and anxiety symptoms during pregnancy have been linked to adverse pregnancy outcomes. However, it is unclear to what extent this depends on these symptoms' specific change-patterns during pregnancy. Therefore, we aimed to identify different trajectories of depressive and anxiety symptoms during pregnancy and to investigate their associations with obstetric outcomes. METHODS:We administered depression and anxiety questionnaires six times during pregnancy (n = 598) and extracted pregnancy-outcome information from obstetric records. We used growth mixture modeling (GMM) to estimate different depressive- and anxiety-symptom course-trajectories and multivariable regression analyses to investigate their associations with pregnancy outcomes, adjusting for known risk factors (e.g., smoking). RESULTS:GMM identified four depressive-symptom and three anxiety-symptom trajectory-classes. Only depression trajectories showed associations with obstetric outcomes. Compared with a trajectory-class with stable low depression scores, a class with high and then decreasing scores showed a lower mean gestational age at delivery, and a class with stable moderate scores showed a higher mean birthweight and less frequent low Apgar scores. Overall, trajectory-classes showed limited associations with obstetric outcomes compared with the included known risk factors. LIMITATIONS:The depression questionnaire applied may overestimate depression in pregnancy because it covers many somatic symptoms. The range of obstetric outcomes was limited. CONCLUSIONS:Depressive-symptom course-trajectories during pregnancy were associated with some obstetric outcomes. However, their associations with obstetric risk seemed limited compared with known risk factors (e.g., smoking, primiparity), stressing the importance of considering a full range of factors when aiming to predict obstetric risk in research and practice.
The comorbidities between MDD and functional disorders (FDs), such as fibromyalgia (FM), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and irritable bowel syndrome (IBS) remain largely unexplored. We analyzed data from 10,563 lifetime MDD cases (mean age = 50.5 (SD = 11.9), 71.8% female) from the Lifelines Cohort Study. Lifetime MDD symptoms from DSM-5 criterion A were assessed in 2018. Current FDs were assessed according to diagnostic criteria between 2014 and 2017. First, we modeled the effect of 12 disaggregated MDD symptoms on FM, ME/CFS, and IBS diagnoses using multiple logistic regression. Most, but not all, MDD symptoms were associated with FD diagnoses, suggesting that some features of MDD are particularly important to the comorbidity between MDD and FDs. Next, we used Latent Class Analysis to classify MDD cases based on their symptoms to explore whether MDD - FD comorbidities were associated with specific symptom profiles. We found that a five-class solution provided the best balance of model fit and entropy. Two classes, termed severe typical and anhedonia/weight gain, associated with increased prevalence of all FDs. The severe typical class was equally associated with FM and ME/CFS, while the anhedonia/weight gain class was differentially associated with pairs of FDs suggesting that features of the anhedonia/weight gain class are uniquely related to different FDs with varying magnitudes of effect and, possibly, different mechanisms. The comorbidity between MDD and FDs does not appear to result from a single mechanism. Identification of the mechanisms that underlie the association between MDD and FDs is a priority for future work.
BACKGROUND:Contemporary theoretical models underlying development of psychotic- and functional disorders show similarities, including attribution of aberrant salience to everyday (bodily) sensations and an increased tendency of top-down generation of perception. In two general population samples of adolescents, we aimed to examine potential associations between subclinical phenomena, namely functional somatic symptoms (FSS) and psychotic experiences (PE). METHODS:We used data from two cohorts of adolescents aged 15-17 years: the Copenhagen Child Cohort 2000 (Denmark, n = 2550) and the TRacking Adolescents' Individual Lives Survey (the Netherlands, n = 1665). We identified comparable self-reported symptoms of FSS and PE respectively in each cohort. The cohort data were analyzed separately to enable replication, and mixed graphical models were used to estimate symptom networks. First, networks including only FSS and PE were modelled. Second, an emotional symptom score was included in the networks. RESULTS:While numerous specific symptom-to-symptom cross-domain associations were not replicated, symptom networks of the two cohorts overall showed relatively comparable patterns. Delusions of persecution showed the strongest connection with FSS in both cohorts. In the models including emotional symptoms, emotional problems were associated with many PE and FSS, but did not fundamentally change the structure of the original networks. CONCLUSION:Using a symptom-based approach the current study lent little support to the notion of specific associations between PE and FSS, yet associations between FSS and PE in adolescence were found in both cohorts. The associations between the two domains could not be fully explained by shared associations with emotional problems.
BACKGROUND:Functional disorders (FDs) are characterized by persistent somatic symptoms and are highly comorbid with internalizing disorders (IDs). To provide much-needed insight into FD etiology, we evaluated FD and ID familial coaggregation and shared familiality. METHODS:Lifelines is a three-generation cohort study, which assessed three FDs (myalgic encephalomyelitis/chronic fatigue syndrome [ME/CFS], irritable bowel syndrome [IBS], and fibromyalgia [FM]) and six IDs (major depressive disorder [MDD], dysthymia [DYS], generalized anxiety disorder [GAD], agoraphobia [AGPH], social phobia [SPH], and panic disorder [PD]) according to diagnostic criteria. Based on 153,803 individuals, including 90,397 with a first-degree relative in Lifelines, we calculated recurrence risk ratios (λRs) and tetrachoric correlations to evaluate familial aggregation and coaggregation of these disorders in first-degree relatives. We then estimated their familiality and familial correlations. RESULTS:Familial aggregation was observed across disorders, with λR ranging from 1.45 to 2.23 within disorders and from 1.17 to 1.94 across disorders. Familiality estimates ranged from 22% (95% confidence interval [CI]: 16-29) for IBS to 42% (95% CI: 33-50) for ME/CFS. Familial correlations ranged from +0.37 (95% CI: 0.24-0.51) between FM and AGPH to +0.97 (95% CI: 0.80-1) between ME/CFS and FM. The highest familial correlation between an ID and FD was +0.83 (95% CI: 0.66-0.99) for MDD and ME/CFS. CONCLUSIONS:There is a clear familial component to FDs, which is partially shared with IDs. This suggests that IDs and FDs share both genetic and family-environmental risk factors. Of the FDs, ME/CFS is most closely related to IDs.
BACKGROUND:Functional Somatic Disorders (FSD) and Internalizing Psychiatric Disorders (IPD) are frequently comorbid and likely share familial/genetic risk factors. METHODS:We performed a Common Factor Multivariate Analysis of 2 FSDs, Fibromyalgia (FM) and Irritable Bowel Syndrome (IBS), and two IPDs, Major Depression (MD) and Anxiety Disorders (AD), in five kinds of Swedish female-female relative pairs: monozygotic (n = 8,052) dizygotic (n = 7216), full siblings (n = 712,762), half-siblings reared together (n = 23,623), and half-siblings reared apart (n = 53,873). Model fitting was by full information maximum likelihood using OpenMx. RESULTS:The best-fit model included genetic, shared environmental, and unique environmental factors. The common factor, ~50% heritable with a small shared environmental effect, loaded more strongly on the two IPDs (~0.80) than the 2 FSDs (0.40). Disorder-specific genetic effects were larger for the 2 FSDs (~0.30) than the 2 IPDs (~0.03). Estimated genetic correlations were high for MD and AD (+0.91), moderate between IBS and IPDs (+0.62), and intermediate between FM and MD (+0.54), FM and AD (+0.28), and FM and IBS (+0.38). Shared environmental influences on all disorders were present but small. CONCLUSIONS:In women, FSDs and IPDs shared a moderate proportion of their genetic risk factors, greater for IBS than for FM. However, the genetic sharing between IBS and FM was less than between MD and AD, suggesting that FSDs do not form a highly genetically coherent group of disorders. The shared environment made a modest contribution to the familial aggregation of FSDs and IPDs.
BACKGROUND:Young children frequently experience physical symptoms, such as common cold, vaccination pain or a playground injury. Picture books about physical symptoms and illness are a source of information for young children. This study assessed the nature and causes of and responses to physical symptoms depicted in Dutch children's picture books. METHODS:A systematic search for Dutch picture books for children between the ages of 2 and 8 years about physical symptoms or illness was conducted in public library catalogues in the Netherlands, with terms such as 'pain' and 'doctor'. Only picture books with a fictional storyline, in which the main character experienced symptoms or illness, were included. A content analysis was conducted by two independent reviewers. RESULTS:Fifty-five books met the inclusion criteria. The most common symptoms were injuries (29%), cold symptoms (21%), fatigue/malaise (14%) and fever (11%). Causes were mostly unknown (41%), due to accidents (38%) or infections (18%). Accidents were always caused by the main character. In 89% of the picture books, remedies were necessary to resolve the symptoms, including bandages (36%), bedrest (33%), medical interventions (33%) or medication (27%). Fifty-six percent of the books depicted seeking medical care. Four themes regarding the morals of the stories were identified: the seemingly scary hospital or doctor, the responsibility of the main character to engage in coping strategies, the importance of social contacts, and illness gains after possible unpleasantness of symptoms. CONCLUSIONS:The picture books about physical symptoms and illness in our sample depicted various symptoms, limited causes and a range of responses. Physical symptoms and illness were rarely normalized in the stories, often requiring medical intervention rather than spontaneous resolution.
Objectives The aim of this study is to explore patients with persistent somatic symptoms and functional disorders’ (PSS/FD) experiences of and preferences for multidisciplinary care across Europe. A further aim is to compare the experiences of and preferences for multidisciplinary care of patients to those of healthcare professionals (HCPs) in the Netherlands.Design Cross-sectional online survey.Setting Patients with PSS/FD from across Europe (Germany, Italy, the Netherlands and Poland) and HCPs working in the care for PSS/FD across all levels of care in the Netherlands.Primary and secondary outcome measures Outcome measures for both patients and HCPs related to experiences of multidisciplinary care, communication between professionals and patients, as well as the main point of contact for patients.Results 600 patients responded (Germany: n=198; Italy: n=174; Netherlands: n=137; Poland; n=91), and 152 HCPs responded from the Netherlands. Compared with the other countries, patients from the Netherlands generally received less multidisciplinary care, from fewer disciplines. Regarding most variables related to interprofessional communication, patients in Italy rated their experience significantly better than in most other countries. Generally, patients preferred either their general practitioner (GP) or a medical specialist as their main point of contact, and not mental health professionals. In contrast, HCPs preferred mental health professionals as the main point of patient contact, followed by GPs. In all variables, patients in the Netherlands rated interprofessional communication significantly lower than HCPs in the Netherlands did.Conclusions Patients have different experiences of interdisciplinary communication, also reporting lower-quality communication than HCPs, though differences are seen between countries. Future studies should look at the reasons for this and how this can lead to improved care for PSS/FD.
IntroductionPersistent somatic symptoms and functional disorders (PSS/FD) are often complex conditions requiring care from multiple disciplines. One way of bringing the different disciplines together is through collaborative care. Little is known about the implementation barriers faced and relevant strategies to tackle the barriers in this field. Therefore, using expert knowledge, we aim to develop realistic strategies for dealing with implementation barriers of collaborative care in PSS/FD.MethodsThe Research World Café method is a single-session, expert-based method with multiple focus-groups forming and reforming to answer a set of inter-related questions, under the guidance of moderators. Using this method, participants involved in PSS/FD care across different areas of healthcare in the Netherlands developed several realistic strategies for dealing with ten implementation barriers for collaborative care in PSS/FD that were previously identified in a Delphi study. Strategies were grouped into strategy clusters using a card-sorting task.ResultsThirty-three participants took part, representing ten different disciplines, most commonly physiotherapists, psychologists, and physicians. In total, 54 strategies, identified in response to the ten barriers, were grouped into eight strategy clusters. The strategy clusters were professional education, communication, care coordination, care pathways, joint consults, funding, patient involvement, and prevention.ConclusionWe identified a number of useful strategies for dealing with implementation barriers for collaborative care in PSS/FD. Many strategies provided ways to deal with multiple barriers at once. The effects of applying these strategies in collaborative care in PSS/FD will need testing through implementation studies, as well as in other areas needing multidisciplinary care.
ObjectiveCurrent diagnostic concepts of somatic symptom disorder (SSD) in DSM-5 and bodily distress disorder (BDD) in ICD-11 require certain psychological criteria, but researchers have called for further specification. Therefore, in a first step, this systematic review and meta-analysis aimed to summarize the current evidence on psychological factors associated with SSD/BDD and/or disorder-relevant clinical outcomes such as symptom severity and impairment.MethodsPsychological factors were systematically searched using Pubmed, Cochrane Library and Psycinfo via EBSCO. Studies providing original data in English or German, after 2009 were included. Cross-sectional, cohort and case-control studies investigating at least one psychological factor in individuals with SSD/BDD in the context of disorder-relevant outcomes were included.ResultsForty-three eligible studies (n = 3760 patients) in SSD (none in BDD) provided data on at least one psychological factor, 37 in case-control format, 10 cross-sectional and 5 longitudinal. Meta-analyses of the case-control studies found patients with SSD to be more impaired by depression (SMD = 1.80), anxiety (SMD = 1.55), health anxiety (SMD = 1.31) and alexithymia (SMD = 1.39), compared to healthy controls. Longitudinal results are scarce, mixed, and require refining, individual studies suggest self-concept of bodily weakness, anxiety and depression to be predictive for persistent SSD and physical functioning.ConclusionThis review provides a detailed overview of the current evidence of psychological factors in relation to SSD/BDD. Future studies on SSD and BDD should include under-studied psychological factors, such as negative affect, fear avoidance, or emotion regulation. More longitudinal studies are needed to assess the predictive value of these factors.
Adolescence is an important period for the development of gender identity. We studied the development of gender non-contentedness, i.e., unhappiness with being the gender aligned with one’s sex, from early adolescence to young adulthood, and its association with self-concept, behavioral and emotional problems, and adult sexual orientation. Participants were 2772 adolescents (53% male) from the Tracking Adolescents’ Individual Lives Survey population and clinical cohort. Data from six waves were included (ages 11–26). Gender non-contentedness was assessed with the item “I wish to be of the opposite sex” from the Youth and Adult Self-Report at all six waves. Behavioral and emotional problems were measured by total scores of these scales at all six waves. Self-concept was assessed at age 11 using the Global Self-Worth and Physical Appearance subscales of the Self-Perception Profile for Children. Sexual orientation was assessed at age 22 by self-report. In early adolescence, 11% of participants reported gender non-contentedness. The prevalence decreased with age and was 4% at the last follow-up (around age 26). Three developmental trajectories of gender non-contentedness were identified: no gender non-contentedness (78%), decreasing gender non-contentedness (19%), and increasing gender non-contentedness (2%). Individuals with an increasing gender non-contentedness more often were female and both an increasing and decreasing trajectory were associated with a lower global self-worth, more behavioral and emotional problems, and a non-heterosexual sexual orientation. Gender non-contentedness, while being relatively common during early adolescence, in general decreases with age and appears to be associated with a poorer self-concept and mental health throughout development.
Many patients with fatigue do not visit a physician. In patients who do consult the general practitioner, the cause of their fatigue is explained in about a quarter: 8 percent has a somatic cause while psychosocial causes explain 16 percent. In about three quarters the cause of fatigue remains unexplained. Because of the low prevalence of somatic causes the general practitioner will be reluctant to perform additional examinations but a thorough physical examination is essential. In patients with a longer duration of fatigue (> 6 months) it is indicated to expand inquiries. This starts with extending history taking in the direction of consanguinity and hereditary diseases. More comprehensive blood tests and investigation of sleep are important further steps. Referral to a specialist is essential as specialists are more familiar with scripts of rare diseases. The prognosis of longer lasting fatigue is bad, especially in the case of fatigue meeting criteria for ME/CFS. Treatment of longer lasting fatigue could compromise of psycho-education, exercise and specific therapies for sleeping disorders.
Objective: The healthcare professional's attitude toward persistent somatic symptoms (PSS) seems to play an important role in access to and quality of care for patients with PSS. To encourage research on PSS attitude, we developed and validated the Professionals' Attitude to Persistent Somatic Symptoms Questionnaire (PAPSS). Methods: A list of items was developed through theory and a focus group with PSS experts, with response categories on a 5-point Likert scale ranging from “strongly disagree” to “strongly agree”. These items were then validated through a sample (N = 411) consisting of medical specialists, general practitioners, and psychologists. Subscales of the PAPSS were constructed using repeated factor analyses and reliability analyses. Results: Exploratory factor analyses resulted in a 15-item questionnaire with four subscales: “Perceived burden” and “Affinity” showed good reliability rates; “Perceived professional competence” and “Openness to patient-centered care” had questionable reliability rates. In general, psychologists had the most pronounced scores on subscales compared to medical specialists and general practitioners. Innovation: The PAPSS is the first questionnaire for exploring the role of the professional's attitude toward PSS; it offers opportunities for further research on the influence of attitude on treatment of PSS. Conclusions: The PAPPS is a relatively short questionnaire that can be used in both quantitative research and clinical care. However, it requires further research on psychometric qualities, including the validation of the translated versions of this questionnaire.