Illness Cognitions Research Articles

Risk and Protective Factors of Psychosocial Functioning inSurvivors of Childhood Cancer: Results of the DCCSS-LATER Study.

This study examines the association between psychosocial risk and protective factors and a wide range of psychosocial outcomes including emotional, social, cognitive, and physical domains in childhood cancer survivors (CCS). CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)-LATER cohort (diagnosed 1963-2001) part 2 (age≥18years, diagnosed < 18years, ≥ 5years since diagnosis) completed questionnaires on psychosocial risk and protective factors (Benefit and Burden Scale, Illness Cognition Questionnaire, Rosenberg Self-Esteem Scale, and Impact of Cancer Scale), and psychosocial outcomes (Hospital Anxiety and Depression Scale, Self-Rating Scale for Post-Traumatic Stress Disorder, TNO-AZL Questionnaire for Adult Health-Related Quality of Life, and Short Form-36). Associations were assessed with regression analysis, adjusting for attained age, sex, number of health conditions, and time since diagnosis, while correcting for multiple testing (p< 0.004). A total of 1382 CCS participated, all diagnosed ≥ 15years ago. The mean age of participating CCS was 36years, and 51% were female. Perceived benefit and burden, acceptance, and helplessness, self-esteem and social support were associated with the psychosocial outcomes. In the models including all psychosocial factors, most associations with psychosocial outcomes were seen for self-esteem (10×), and perceived burden (9×). Self-esteem (all β≤ 0.47) and perceived burden (all β≤ 0.38) demonstrated strongest associations of medium/large size. Perceptions of childhood cancer, illness cognitions, self-esteem, and social support play a role in explaining psychosocial functioning in CCS, outweighing the influence of socio-demographic and medical variables. Addressing negative perceptions and reducing feelings of helplessness, while promoting acceptance, self-esteem, and social support, could provide intervention targets for CCS who encounter psychosocial challenges.

Illness cognitions and parental stress symptoms following a child's cancer diagnosis.

This research aims to explore parents' cognitive beliefs, specifically illness cognitions, in response to their children being diagnosed with cancer. This study is an initial step toward providing regular psychosocial assessment as a standard for psychosocial care for children with cancer and their families in Latvia. Data were collected from 120 parents (mostly mothers, n = 109) as an initial evaluation of the psychosocial risks faced by families participating in the support program "Holistic and Multidisciplinary Support for Children with Functional Disabilities and Their Family Members," which was managed by the Children's Hospital Foundation at the Children's Clinical University Hospital in Riga (Latvia) from 2020 to 2023. The patients comprised 66 boys and 54 girls (M age = 7.1, SD = 4.7, range: 0-17 years) with diverse cancer diagnoses. The parents completed the Latvian version of the Psychosocial Assessment Tool [adapted from PAT 3.1], with five subscales included in the data analysis (Social Support, Child Problems, Family Problems, Stress Reactions, and Family Beliefs). The Family Belief subscale was adjusted specifically to address the unique objectives and research questions of the current study. Significant correlations were found between children's psychological problems (e.g., getting upset about medical procedures, hyperactivity, excessive use of electronic devices, etc.) and parental stress reactions after diagnosis and with self-reported symptoms of anxiety and depression. The associations were statistically significant, even after controlling for sociodemographic and medical factors such as diagnosis. The relationship between children's problems and parental stress reactions was partly mediated by Family Beliefs about illness. The most informative beliefs associated with parental stress symptoms and the family's psychosocial risk level were identified, and significant results were found according to the main component of beliefs (catastrophic vs. optimistic) that explained 42% of the variance in the Family Beliefs subscale. Understanding the habitual responses to stress and identifying the thinking patterns of parents that lead to distorted views and maladaptive coping are essential for customizing personalized interventions to enhance treatment compliance. The Latvian version of PAT is a useful psychosocial screening measure in pediatric oncology settings.

Psychological intervention based on cognitive behavioral therapy for patients with orthopedic surgical anxiety.

To develop a set of cognitive behavioral therapies (CBTs) to alleviate anxiety in orthopedic surgery (OS) patients, to explore the intervention effects of CBTs on the indicators of anxiety, sleep quality, and pain sensation in OS patients, and to promote them. A total of 68 qualified subjects were selected from among the 103 patients with orthopedic diseases who were hospitalized in the orthopedic department of the hospital between June 2022 and November 2023. According to the different nursing methods, they were divided into a psychological intervention (PI) group and a control intervention group. Among them, 34 patients received hospital-developed CBT for OS in the PI group, and 34 patients received standard orders from the medical staff in the control intervention group. Tools such as self-assessment of anxiety, Athens insomnia scale, state anxiety scale, visual analog pain method, and self-management level scale were utilized to assess the change in anxiety levels, sleep quality, pain perception, and self-management level of the 2 groups of patients before and after the surgery. Following the CBT intervention, patients in the PI group had significantly lower Athens insomnia scale (5.32 ± 0.42), state anxiety scale (38.21 ± 1.12), and visual analog pain method (3.93 ± 1.24) scores than those in the control intervention group. This difference was statistically significant (P < .05). In the meantime, patients in the PI group had a substantially higher correct rate of illness cognition assessment (98.21%) than patients in the control intervention group (65.12%), and this difference was statistically significant (P < .05). The study collated the factors affecting anxiety in OS patients through questionnaire survey and statistical analysis experiment and then formulated a detailed CBT strategy for specific problems. Finally, CBT is a valuable tool for reducing anxiety in OS patients. As such, it deserves to be promoted and used in clinical settings.

Turkish cross-cultural adaptation, construct validity, and reliability of the treatment expectations in chronic pain scale.

Measuring treatment expectations using the Treatment Expectations in Chronic Pain (TEC) scale has the potential to help clinicians and researchers better understand the role that treatment expectations play within the framework of multimodal pain management settings. The purpose of this study is to determine the cross-cultural adaptation, construct validity and reliability of the TEC Scale in the Turkish language. The study included 191 volunteers aged 22-65 with chronic musculoskeletal diseases. This study composed of a six-stage cross-cultural adaptation process, which included translation, translation synthesis, back-translation, expert committee review, pre-testing and documentation submission. The Positivity Scale and Illness Cognition Questionnaire were used to measure convergent validity while the Hospital Anxiety and Depression Scale was used to test divergent validity. The psychometric properties of the Turkish version of the TEC scale was examined by confirmatory factor analysis (CFA). Scale's internal consistency was examined using Cronbach's alpha. Pearson correlation coefficients were utilized to evaluate both convergent and divergent validity. The significance level was set at p < .05. The results of the CFA showed that factor structure of predicted subscale fitted well the data (x2/df = 3,07;CFI = 0,91,IFI = 0,91 TLI = 0,87,RMSEA = 0,10). The results of the CFA indicated that factor structure of ideal subscale fitted well with the data (x2/df = 2,38;CFI = 0,92,IFI = 0,93,TLI = 0,90,RMSEA = 0,08). Both subscales of the TEC were strongly correlated. The predicted subscale had moderate relationships to depression, anxiety, and positivity (r=-0.37 to r = 0.55) but poor correlations with measures of acceptance, perceived benefits and helplessness (r=-0.24 to 0.35). The ideal subscale had moderate correlations with measures of positivity (r = 0.36) and depression (r=-0.38) but poor correlations with measures of acceptance, perceived benefits helplessness and anxiety (r = 0.14). The Turkish version of the TEC scale is acceptable, valid, and reliable for use in Turkish patients with chronic musculoskeletal pain in physiotherapy outpatient practice.

Cultural adaption, translation, preliminary reliability and validity of psychological and behavioural measures for adolescents living with HIV in Botswana: A multi-stage approach.

Human immunodeficiency virus (HIV) remains a significant public health issue among young people living in Botswana. There is a need for reliable and valid psychological and behavioural measures of causally important constructs for this population. We developed a new HIV knowledge measure for use with 10-19-year-olds living with HIV and translated and adapted additional tools measuring HIV adjustment, HIV disclosure cognitions and affect, HIV communication beliefs, antiretroviral (ART) adherence, and self-esteem, using a multi-step process. This included (1) item generation for the HIV knowledge questionnaire, (2) translation including back-translation and expert review, (3) cognitive interviewing, (4) reliability testing (5) preliminary validity analysis. The HIV Knowledge Questionnaire for Adolescents living with HIV, the Illness Cognition Questionnaire, the Adolescent HIV Disclosure Cognition and Affect Scale, the HIV Communication Beliefs Scale, and the Rosenberg Self-Esteem Scale showed acceptable or good reliability and some evidence of validity for adolescents living with HIV in Botswana.

Illness cognition and associated socio-demographic and clinical factors in parents of children with leukemia

PurposeIllness cognition is an important mediator between psychological and behavioral adjustment and the quality of life for patients and their caregivers. Evidence related to illness cognition among parents of children with leukemia is limited. The purpose of this study is to explore the illness cognition status and associated factors in parents of children with leukemia.MethodsA cross-sectional survey was conducted with the parents of 335 children with leukemia from three general children’s hospitals in China from January to December 2022. A parents’ version of the illness cognition questionnaire was used to collect data. This included three subscales: helplessness, acceptance, and perceived benefits.ResultsThe mean scores of helplessness, acceptance and perceived benefits of parents regarding their children’s disease were 15.56 (4.60), 16.25 (4.41), and 19.96 (3.69) respectively. The multiple regression model indicated seven factors associated with the parents’ illness cognition (adjusted R [2] ranged from 0.182 to 0.134): four socio-demographic factors (parent’s age, role, education level, and family income) and three clinical factors (length of time spent each day caring for the child, the child’s age at diagnosis, and the duration of the disease).ConclusionThis study reports on different levels of illness cognition and associated factors among parents of children with leukemia. The results may help pediatric oncology medical staff identify risk factors for poor psychological adjustment to children’s diseases. Parents may benefit from psychological support aimed at improving positive illness cognition.

Anxiety in Polish adult patients with inborn errors of immunity: a cross-sectional study.

Patients with inborn errors of immunity (IEI) experience recurrent infections, autoimmunity, and malignancies. Owing to repeated medical procedures, the need for constant treatment and surveillance, and the unpredictable course of the disease, patients with IEI are prone to develop mental health disorders, including anxiety. In this study, we aimed to assess the prevalence and level of anxiety symptoms in adult Polish patients with IEI and explore the determinants of anxiety in this group of patients. Data from 105 Polish patients with IEI were collected via the hospital anxiety and depression scale (HADS), brief illness perception questionnaire (B-IPQ), illness cognition questionnaire (ICQ), Pittsburgh sleep quality index (PSQI), and a questionnaire on general health and demographic data. For statistical analyses of data, the normality of distribution of quantitative data was assessed, and internal consistency of tests was investigated using Cronbach's alpha coefficient; moreover, we performed the analysis of correlations and between-group differences, and path analysis to explore causal relationships. Significance was considered at p < 0.050. Thirty-eight (36.2%) patients had anxiety symptoms (HADS-A ≥ 8); 14 (13.3%) patients had severe anxiety (score ≥ 11), and 24 (22.9%) had moderate anxiety (score of 8-10). Patients with poor sleep quality, higher pain frequency, younger age, and no fixed income had higher anxiety scores than others. Emotional and cognitive representations of illness were positively correlated with anxiety levels. Intense anxiety was related to more negative illness perception, higher helplessness, lower illness acceptance, and lower perceived benefits. Anxiety is common in patients with IEI. However, results indicate that it is not related to a more severe course of IEI or several comorbidities, whereas, pain frequency and poor sleep quality were identified to be important clinical factors for anxiety. Because anxiety was related to negative illness perception, psychological therapy may apply to this group of patients.

Psychometric properties of the Malay version of the Illness Cognition Questionnaire among cancer patients in Malaysia

ObjectiveThe Illness Cognition Questionnaire (ICQ) was translated from its original English version to the Malay version for this research, adapted the Malay language version of the ICQ (ICQ-M) for use in cancer patients, and assessed the internal consistency, content, face, construct, convergent, discriminant and concurrent validity of the ICQ-M among a cohort of cancer patients with mixed cancer types in Malaysia.MethodInitially, the ICQ was translated into Malay and back-translated, and its content and face validity were evaluated. Then, 346 cancer patients with various cancer types received the ICQ-M, and its internal consistency, convergent, discriminant, construct, and concurrent validity were evaluated.ResultsThe ICQ-M and its domains had acceptable internal consistency with Cronbach’s α ranging from 0.742 to 0.927. Construct validity assessment demonstrated that the ICQ-M consists of 17 items designated in two domains with good convergent and discriminant validity. The ICQ-M and its domains also had moderate correlations with the Acceptance and Action Questionnaire II, which denotes that the ICQ-M had acceptable concurrent validity.ConclusionThe ICQ-M had good psychometric properties and is now available to measure the illness cognition of cancer patients in Malaysia.

Effect of Training for an Athletic Challenge on Illness Cognition in Individuals with Chronic Disability: A Prospective Cohort Study.

Illness cognitions (IC) influence how a patient adapts to a chronic disease. The aim was (1) to determine if training for a handcycling mountain time trial (HandbikeBattle) improves IC and (2) to identify factors associated with IC change scores. Persons with a chronic disability (N = 220; including N = 151 with spinal cord disorder) trained 5 months and participated in the time trial. The IC Questionnaire measured helplessness, acceptance, perceived benefits and was assessed before training (T1), after training (T2), and four months after the event (T3). Age, sex, body mass index (BMI), time since injury (TSI), disability characteristics, self-efficacy, mental health (MH) and musculoskeletal pain were obtained at T1. Multilevel regression analyses showed that helplessness decreased (from 11.96 to 11.28, p < 0.01) and perceived benefits increased (from 16.91 to 17.58, p < 0.01) from T1 to T2. For helplessness this decrease persisted during follow-up (11.16 at T3). Changes in helplessness were associated with self-efficacy (p = 0.02), MH (p = 0.02) and lesion completeness (p = 0.02), and were independent of disability type (p = 0.66), lesion level (p = 0.30) and demographics such as sex (p = 0.29) and age (p = 0.67). Training with peers may improve helplessness and perceived benefits in individuals with a chronic disability. Especially individuals with MH problems might benefit from training for an athletic challenge with peers to improve illness cognitions, and ultimately, quality of life.

Annual Research Review: Health anxiety in children and adolescents-developmental aspects and cross-generational influences.

Health anxiety involves excessive worries about one's health along with beliefs one has an illness or may contract a serious disease. Concerning evidence suggests that health anxiety is on the rise in society, possibly further fueled by the COVID-19 pandemic. Recent classification systems acknowledge that impairing health-related worries and beliefs can emerge in early childhood with significant levels of symptoms persisting throughout childhood, and possibly continuous with diagnostic considerations in adulthood. This narrative review summarizes recent research advances in health anxiety in children and adolescents, focusing on various developmental aspects of health anxiety and related concepts in youths. Findings suggest that health anxiety symptoms in young age groups are associated with impairment, distress, and increased healthcare use, as well as substantial comorbidity with mainly other emotional problems and disorders. Furthermore, longitudinal studies suggest that childhood health anxiety can persist across adolescence, perhaps with links to chronic courses in adulthood. The growing literature was further reviewed, thus extending our understanding of early risk factors, including the potential role of exposure to serious illness and transgenerational transmission of health anxiety. Learning more about developmental trajectories will be highly relevant to inform strategies for early detection and prevention. While modified cognitive behavioral therapies in adults are successful in treating health anxiety, specific interventions have not yet been tested in youths. Given substantial overlaps with other psychopathology, it could be important to develop and explore more transdiagnostic and scalable approaches that take advantage of common factors in psychotherapy, while also including a wider perspective on potential familiar maladaptive illness cognitions and behaviors.

Does the disposition of passive coping mediate the association between illness perception and symptoms of anxiety and depression in patients with spinal cord injury during first inpatient rehabilitation?

Purpose To examine associations between illness perception, also called illness cognitions or appraisals, disposition of passive coping, and symptoms of anxiety and depression, and to test whether passive coping mediates the associations between illness perception and symptoms of anxiety and depression. Materials and methods Longitudinal, multicentre study. Participants were inpatients of spinal cord injury (SCI) rehabilitation. Measures included the Brief Illness Perception Questionnaire (B-IPQ), the Utrecht Coping List passive coping subscale (UCL-P), and the Hospital Anxiety and Depression Scale (HADS). Mediation was tested with the PROCESS tool. Results The questionnaires were completed by 121 participants at admission and at discharge. Of them, 70% were male, 58% had a paraplegia, and 82% an incomplete lesion. Weak to strong (0.294–0.650) significant associations were found between each pair of study variables. The use of passive coping strategies mediated the associations between illness perception and symptoms of anxiety and depression. Conclusion Symptoms of anxiety and depression were more frequent in people who have a threatening illness perception combined with a lower use of passive coping strategies. Therefore, it is advised that patients are screened and treated for threatening illness perception and high use of passive coping strategies during rehabilitation after SCI.

PB0620 (Mis)Labeling Hemophilia Severity: Exploring the Illness Cognitions of Persons with Hemophilia

PB0620 (Mis)Labeling Hemophilia Severity: Exploring the Illness Cognitions of Persons with Hemophilia

The Interrelations of Family Relationship, Illness Cognition of Helplessness and Perceived Barriers to Medication Adherence: A Study of Adolescent and Emerging Adult Kidney Recipients and Their Parents.

Medication adherence among adolescents and emerging adults following kidney transplantation was found to be lower with harmful consequences. The current study aimed to examine associations between illness cognition of helplessness, family relationships, and perceived barriers to medication adherence among post-kidney transplant adolescent and emerging adult recipients and their parents by applying a dyadic perspective. Fifty-nine dyads of adolescents and emerging adults aged 11-26 years and their parents, were recruited from a pediatric nephrology department in a medical center in Israel. Both adolescents and emerging adults and parents completed self-report questionnaires addressing illness cognition of helplessness (subscale of Illness Cognition Questionnaire), family relationships related to conflict and cohesion (Brief Family Relationship Scale), and the adolescents' perceived barriers (Adolescent Medication Barriers Scale) to taking their prescribed medications. Adolescents' and emerging adults' perceptions of family conflicts moderated the link between illness cognition of helplessness among parents and barriers to medication adherence via the illness cognition of helplessness among adolescents and emerging adults. However, only the adolescents' and emerging adults' perceptions of family cohesion had a direct association with barriers to medication adherence. Parents' perceived family conflict and cohesion did not directly associate with barriers to medication adherence. Findings highlight the complex interplay between family dynamics, illness cognition, and barriers to medication adherence in adolescents and emerging adults. Parents', adolescents' and emerging adults' perceptions of family conflicts and cohesion, as well as their illness cognitions, can play important roles in understanding and addressing barriers to medication adherence in this population. The study reveals findings that highlight the dyadic transference process of illness cognition of helplessness among both adolescent and emerging adult kidney recipients and their parents in assessing barriers to medical treatment.

Does older mean flexible? Psychological flexibility and illness cognitions in chronic medical conditions - the moderating effect of age

ABSTRACT Adjustment to a Chronic Medical Condition (CMC) is associated with developing hypotheses regarding one’s symptoms, known as illness cognition (IC). Aging is associated with a higher rate of CMC. We assessed the effects of aging and psychological flexibility (PF)-one’s ability to be open to change, and to alter or persist in behaviors according to environmental circumstances – on IC development in CMC. In a cross-sectional study of hospitalized patients with CMC, 192 patients in four age groups: younger (<50), midlife (50–59), young old (60–69), and elderly (≥70) completed questionnaires sampling IC, PF and demographics. Younger participants reported less helplessness (IC) while lower scores in one PF component (perceiving reality as multifaceted) were reported by the elderly (≥70); older age was associated with a more fixed, narrow perception of reality. Both effects remained significant when using the medical condition severity as a covariate. In general, age was positively associated with IC of acceptance and Helplessness. In regression analysis, CMC severity significantly predicted all IC. Moreover, the interaction of age and perceiving reality as dynamic and changing (PF-RDC component) significantly predicted IC- acceptance of illness; follow-up analysis revealed significant correlations between PF-RDC and acceptance only for younger patients (< age 50). PF-RDC also significantly predicted IC – perceived benefit; among the entire sample higher RDC was associated with less IC – perceived benefit. Implications for theory and practice are discussed.

Illness Perceptions, Cognitions, and Beliefs on COPD Patients' Adherence to Treatment - A Systematic Review.

Chronic Obstructive Pulmonary Disease (COPD) is a chronic inflammatory lung disease characterized by persistent respiratory symptoms and airflow limitation. Besides its irreversibility, COPD is a treatable condition, and patients would strongly benefit from being adherent to their treatments. However, almost half of them are non-adherent, and, according to several recent studies, the way the patient perceives the disease might influence this variable. This systematic review provided a synthesis of studies about the relationships between illness perceptions (IP), cognitions, beliefs, and adherence in COPD. English language publications were searched in PubMed, Medline, Scopus, ResearchGate, PsycINFO, and Cochrane Library databases from November 2022 to February 2023, following PRISMA guidelines. The reference lists of eligible studies were also searched. Data extraction and critical appraisal were undertaken by two reviewers working independently. A total of 14 studies were included. Adherence to treatment in COPD is confirmed to be low, using both self-report questionnaires and objective assessment systems. Most studies concluded that COPD is perceived as a moderate threat destined to last forever, even if many participants referred to little disease knowledge. This perception did not change between adherent and non-adherent groups. Those who considered more necessary to take their medicines and had a caregiver were more adherent and less concerned about their future. On the other side, forgetfulness, lack of trust in medications, and difficulties in understanding how to take them were perceived as the main causes of non-adherence. Other predictors of non-adherence, like depression, low self-efficacy, and severity of disease were confirmed. The systematic review highlights the variability of the relationship between IP, cognitions and beliefs, and COPD treatment adherence. A new level of awareness of the relationship between patients' subjective point of view and treatment adherence may inform future treatment options and promote a more personalized intervention.

Illness Perception and Coping Strategies on the Perceived Quality of Life in Adults with Coronary Heart Diseases: A Model Evaluation

Background: Patients' perceptions of illness can influence their compliance with medical recommendations and, consequently, their perceived quality of life. Objectives: This study aimed to evaluate illness perception in patients diagnosed with coronary heart disease (CHD). Methods: This cross-sectional correlational study was conducted on 300 individuals with CHD, who were selected from the specialized heart clinics affiliated with Mazandaran University of Medical Sciences in 2018 using the convenient method. The researcher used the brief illness perception questionnaire (B-IPQ), the coping schemas inventory (CSI), and a 3-item questionnaire (designed by the researcher) to collect data. The Data were analyzed by the Structural Equation Modeling Modeling (path analysis) in LISREL based on the Maximum Likelihood Estimation (MLE) at P &lt; 0.01 and P &lt; 0.05. Results: A total of 60% of the individuals aged between 30 to 65, including 60.3% male and 39.7% female. Based on the research model, paths of coping strategies directly affected the perceived quality of life. Illness cognition directly impacts coping strategies and indirectly affects the perceived quality of life through the mediating role of managing strategies. Based on the evaluation of SRMI, perceived quality of life can be predictive through coping strategies and illness cognition. Conclusions: Based on the results, patients should be informed about their illness’s cognitive components and adaptive coping strategies, including situational coping strategies, coping by social support, acceptance, and active emotional expression coping to improve their quality of life.

Presumptive Behavioural Indices and Psychological Well-Being of Academic Staff in Tertiary Institutions in Ogun State, Nigeria

This study was designed to investigate presumptive behaviours (spirituality, health-seeking behaviour and illness cognition) on the psychological well-being of academic staff in tertiary institutions in Ogun State, Nigeria. A descriptive survey design was used. A simple random technique was employed from three purposively selected tertiary institutions in Ogun State to select 208 respondents representing 10.1% of 2,050 academic staff. Namely Federal College of Education Abeokuta (83 - 39.9%), Moshood Abiola Polytechnic (75 - 36.1%) and Federal University Agricultural (FUNNAB) (50 - 24.0%). The instruments used were the health-seeking behaviour questionnaire, psychological well-being scale, spirituality self-report questionnaire and brief illness perception questionnaire. The data to be obtained was analysed using descriptive statistics and Multiple regression. Results showed that except for spirituality, there was a significant relationship between the independent variables (health-seeking behaviour, and illness cognition factors) and psychological well-being among lecturers in some selected institutions in Ogun State, Nigeria. There was a significant composite contribution of health-seeking behaviour, spirituality and illness cognition and psychological well-being among lecturers in some selected institutions in Ogun State, Nigeria. Implications and recommendations were discussed.

Psychosocial functioning of parents of Dutch long-term survivors of childhood cancer.

To describe health-related quality of life (HRQoL), post-traumatic stress and post-traumatic growth of parents of long-term survivors of childhood cancer (CCS) and study associated factors. Parents of survivors of the Dutch Childhood Cancer Survivor Study LATER cohort below 30years and diagnosed 1986-2001 were invited to complete the TNO-AZL Questionnaire for Adult's HRQoL (e.g., sleep and aggressive emotions), Self-Rating Scale for Post-traumatic Stress Disorder, Post-traumatic Growth Inventory, and Illness Cognition Questionnaire. HRQoL domain scores were compared to references using Mann-Whitney U tests. Correlations between post-traumatic stress, growth and HRQoL were evaluated. Medical characteristics of their child and illness cognitions were studied as associated factors of HRQOL, post-traumatic stress and growth. p<0.05 was considered statistically significant. Parents (n=661 of n=448 survivors, 56% female, mean time since child's diagnosis: 21.3 [SD: 3.3] years) reported better HRQoL in social functioning and aggressive emotions than references (r=.08-0.17). Mothers additionally reported better HRQoL in pain, daily activities, sexuality, vitality, positive and depressive emotions (r=.07-0.14). Post-traumatic stress was symptomatic in 3%, and associated with worse HRQoL (r=-0.27-0.48). Post-traumatic growth was positively associated to post-traumatic stress and better HRQoL (r=0.09-0.12). Cancer recurrence was associated to better HRQoL (β=0.37-0.46). Acceptance illness cognitions were associated to better (β=0.12-0.25), and helplessness to worse outcomes (β=0.14-0.38). HRQoL of parents of young adult survivors of CCS is comparable to references or slightly better. Only a small proportion reports symptomatic post-traumatic stress. Improving acceptance and reducing feelings of helplessness may provide treatment targets for parents with psychosocial problems.

Illness Cognition and Family Adjustment among Parents of Children with Disabilities Attending Speech Clinics and Rehabilitation Centers

Illness Cognition and Family Adjustment among Parents of Children with Disabilities Attending Speech Clinics and Rehabilitation Centers

Online cognitive-behavioral group intervention for young adult survivors of childhood cancer: a pilot study

Background Young adult childhood cancer survivors (YACCS) are a vulnerable group in need of psychosocial support, but tailored interventions are lacking. Aim To examine feasibility and satisfaction, and to explore preliminary effectiveness of an online group intervention (Op Koers Online for YACCS) aimed at teaching active coping skills and providing peer-contact, thereby reducing and preventing psychosocial problems in YACCS. The intervention is based on psycho-education, cognitive behavioral therapy, and aspects of acceptance and commitment therapy. Methods YACCS completed questionnaires pre- and post-intervention. Feasibility was based on attendance, drop-out, and an evaluation questionnaire was administered to assess satisfaction. Preliminary effectiveness was evaluated with the Mastery Scale, Illness Cognition Questionnaire, Distress Thermometer, Impact of Cancer - Childhood Survivors, and Pediatric Quality of Life Inventory. Preliminary effectiveness was investigated by testing differences on the psychosocial outcomes (coping and psychosocial wellbeing) between T0 and T1 within respondents, using paired samples t tests and Cohen’s d. Results 10 YACCS participated in the intervention and completed all questionnaires. There was no drop-out; 90% of participants attended five out of six sessions. Overall, participants were satisfied with the intervention; 7.6 on a 0-10 scale. Distress (Cohen’s d=-.6, p=.030) and feelings of helplessness (Cohen’s d=-.8, p=.001) reduced from T0 to T1, while self-efficacy (Cohen’s d=.8, p=.013,) improved. Other outcomes displayed small effects, but did not change significantly. Conclusions This first, small pilot study showed short-term decrease in distress and feelings of helplessness and improvement of self-efficacy. Op Koers Online was positively evaluated by YACCS and course leaders, filling a gap in psychosocial services for YACCS.