Illness Cognition Questionnaire 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.

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.

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.

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.

Illness perception and perceived benefits of illness among persons with type 1 diabetes

BackgroundIllness perception is assigned an increasing role in the control of chronic disease. This study examines illness perception and perceived benefits related to illness in persons with type 1 diabetes mellitus. We used quantitative and qualitative methods for a more in-depth analysis.Participants and procedureThe participants (N = 110; mean age: 31.52 years; 80.9% women) completed online questionnaires: the Brief Illness Percep-tion Questionnaire (B-IPQ), the perceived benefits subscale of the Illness Cognition Questionnaire (ICQ) and the Hospital Anxiety and Depression Scale (HADS). Interpretative phenomenological analysis (IPA) was used to analyze patients’ re-sponses to an open-ended question regarding perceived benefits.ResultsPerceived benefits score was positively correlated with personal (ρ = .20) and treatment control: life-style (ρ = .25) and co-herence (ρ = .22). Negative correlations were noted between B-IPQ total score (ρ = –.30), concern (ρ = –.30), depression (ρ = –.35), anxiety (ρ = –.32) and irritability (ρ = –.19). 52.7% of participants reported at least one benefit of having type 1 diabetes. Patients who reported at least one benefit had statistically significantly higher scores in the perceived benefits subscale (p &lt; .001), personal control (p = .005) and treatment control (p = .030) and lower scores in consequences (p = .023), identity (p = .045), concern (p &lt; .001), emotional response (p &lt; .001), and illness perception total score (p &lt; .001) than those who did not report any benefit. IPA revealed four main themes: personal benefits, health-related benefits, social contacts and economic benefits.ConclusionsThe study revealed that in patients with type 1 diabetes perceived disease benefits are closely related to more positive illness perception and lower levels of depression, anxiety and irritability. The findings suggest that addressing potential benefits related to illness may influence the emotional state.

Investigation of the relationship between the use of complementary alternative medicine and illness perception and illness cognition in patients with diabetic foot ulcer

Objective: to examine the relationship between illness perception, illness cognition, and other sociodemographic characteristics of individuals with diabetic foot ulcer (DFU) and their complementary alternative therapies (CAM) use within the framework of self-regulation model (SRM). Material and methodsThis cross-sectional descriptive study was carried out with 220 individuals with DFU in the Endocrinology and Metabolic Diseases outpatient clinic of two training and research hospitals between December 5, 2020, and June 5, 2021. Research data were collected by using the Patient Information Form, Brief Illness Perception Scale (BIPS), and Illness Cognition Questionnaire (ICQ). Descriptive statistical methods and the Mann-Whitney U test were used to were used in the evaluation of the data. The determinants of the CAM use status of the patients were evaluated by logistic regression analysis. ResultsIt was determined that 136 (61.81%) patients who used CAM mostly preferred herbal methods. Patients' mean scores were 42.23 ± 5.66 on the total BIPS, 39.65 ± 16.01 on the total ICQ. Increasing age, female gender, increased disease perception (BIPS) and disease cognition (ICQ) increased the use of CAM (Nagelkerke R2:0.552; Model: x2 = 168.579 p = 0.00) ConclusionsIt was determined that our patients frequently preferred CAM. Predictors of CAM use were identified as female gender, advanced age, illness perception, and illness cognition. Accordingly, for effective management of DFU, besides the comprehensive evaluation of individuals with DFU and the provision of wound care by health care professionals, illness perceptions, illness cognition, and CAM use should be considered carefully.

Exploring treatment adherence in long-term sick-listed workers and the impact of coping strategies, illness perceptions and perceived health

BackgroundTreatment adherence is important to improve return to work in sick-listed workers. Especially in long-term sick-listed workers who apply for a disability benefit and therefore have not (fully) returned to work, it is of great value to gain insight in the adherence to advice of physicians. Non-adherence could be one of the main reasons why they have not returned to work and are sick-listed for a long-term. The aim of the study is to explore treatment adherence and possible associated factors to advice from medical and occupational health physicians in long-term sick-listed workers.MethodsThe study is a cross-sectional survey study among 561 long-term (partly) sick-listed workers applying for a disability benefit. Associations of sociodemographic characteristics, disease related factors, coping strategies (Utrecht Coping List, UCL), illness perception (Illness Cognition Questionnaire, ICQ) and perceived health (Short-Form 12, SF12) with treatment adherence (measured with the Medical Outcomes Study Measures of Patient Adherence, MOS-MPA) were analysed separately for adherence to medical advice (n = 348, mean age 51.3 ± 9.1 years, 55.9% female) and adherence to occupational advice (n = 229, mean age 50.4 ± 9.5 years, 54.1% female).ResultsAmong participants, 63.3% to 76.4% reported they were able to do what the physician told them to do. However, about half of the participants found it easy to follow-up and implement the suggestions of the physician (54.3% for medical advice and 50.2% for occupational advice). Having a mental health disorder was negatively associated with adherence to medical advice. An active coping strategy, acceptance of the disease, and perceiving positive long-term consequences of the disease were associated with a higher adherence, whereas focusing on the negative consequences was associated with a lower adherence, both for medical and occupational advice.ConclusionsThe tendency to adhere to medical and occupational advice in long-term sick-listed workers is relatively low. In order to increase return to work in this population, medical and occupational health physicians should especially be aware of the adherence of sick-listed workers with mental health disorders, but also on those who focus on the negative consequences of their (physical or mental health) disorder.

Social and Emotional Support Highly Associated with Helplessness among Coronary Heart Disease Patients

BACKGROUND: Helplessness is a factor that adversely affects patients with coronary heart disease (CHD). The factors related to this situation have become essential to be investigated. Meanwhile, one of the factors that have the potential to reduce this situation is social support. However, there has been no research related to this in the Indonesian population. AIM: Therefore, this study aims to assess the relationship between social support and helplessness among patients with CHD. METHODS: This was a correlational study where 107 outpatient and inpatient patients at a hospital in West Java, Indonesia, were obtained. The data were collected using a demographic questionnaire, Illness Cognition Questionnaire on the dimensions of helplessness, and the Enhancing Recovery in CHD Social Support Inventory. Furthermore, the data were analyzed by Pearson and linear regression. RESULTS: The respondents were 78% of males, while 22% were female. Most of the patients (88%) were married. The bivariate analysis showed that social support and its subvariable emotional support were significantly related to helplessness (p &lt; 0.05, r = −0.248), while the other subvariable structural and instrumental support were not significantly related (p &gt; 0.05). The regression analysis results showed that social and emotional support had a significant effect (p &lt; 0.05) with R2 (95% CI) of 042 and 0.05, respectively. CONCLUSIONS: The social and emotional support among CHD patients was associated with helplessness. The higher the supports obtained, the lower the patient’s helplessness. Therefore, nurses need to encourage family or those closest to patients to provide adequate social and emotional support.

Illness cognition and depression among patients with coronary heart disease.

Depression is a significant predictor of the quality of life among patients with coronary heart disease. Therefore, it is essential to explore the factors associated with depression. Illness cognition is considered one of the factors affecting depression. However, the relationship between illness cognition and the incidence of depression among Indonesian patients have not been widely investigated. This study aimed to investigate the correlation between illness cognition, consisting of the acceptance, perceived benefits, and helplessness variables, and depression in patients with coronary heart disease. This study employed a correlational research design with a total of 106 patients undergoing treatment at a hospital in West Java, Indonesia, selected using convenience sampling. Data were collected using a demographic questionnaire, Beck-Depression Inventory-II (BDI-II), and ICQ (Illness-Cognition Questionnaire). Data were analyzed using mean (SD), median, frequency distribution, and Spearman-rank. 72% of respondents had no depression. Nevertheless, mild, moderate, and major depression suffered by 15%, 9%, and 4% of respondents, respectively. In terms of illness cognition, patients scored higher within the perceived benefits dimension (mean 20.13, SD 3.05), followed by acceptance (mean 18.22, SD 3.33) and helplessness (mean 13.20, SD 4.77), respectively. Furthermore, helplessness was significantly associated with depression (p <.01) with a positive correlation coefficient (r). Also, all items on the helplessness dimension had a significant correlation (p <.01) with depression accompanied by a positive r-value. Helplessness had a significant relationship with depression. So, cardiovascular nurses can anticipate depression in patients by making nursing interventions that can decrease the patients' feelings of helplessness. Thus, factors that reduce helplessness need to be explored and taken into accounts in the treatment of patients with coronary heart disease.

The Mediating Effect of Positive Illness Cognitions on Experiential Avoidance and Quality of Life in Breast Cancer Patients

Objective:Illness cognition plays an essential role during physical, psychological, and social adjustment among patients with cancer. The present study aims to explore the mediating effects of positive illness cognition on experiential avoidance and quality of life (QOL) in this population.Methods:Between August 2017 and June 2019, we recruited 312 patients with breast cancer in the treatment period from a general tertiary hospital's breast department using convenience sampling. We used the Illness Cognition Questionnaire, the Acceptance and Action Questionnaire II, and the Functional Assessment of Cancer Therapy-Breast Scale.Results:The mean score of QOL was 93.39 (SD: 18.60) for patients with breast cancer. Positive illness cognition was closely related to the QOL and experiential avoidance. Experiential avoidance significantly negatively correlated with QOL (r = −0.59, P < 0.01) and positive illness cognition (r = −0.60, P < 0.01), while positive illness cognition significantly positively correlated with QOL (r = 0.82, P < 0.01). Positive illness cognition had a mediating effect between experiential avoidance and QOL (effect size: −0.56), accounting for 87.14% of the total effect.Conclusions:The QOL was low in Chinese patients with breast cancer. Positive illness cognition had a mediating effect between experiential avoidance and QOL. Caregivers should indirectly improve patients' QOL with breast cancer by improving their positive illness cognition levels.

Awareness and cognition of illness in Saudi Arabian patients with Crohn's disease.

Background:Crohn's disease (CD) is a progressive illness associated with high morbidity owing to the complications associated with the condition. Patients' awareness and cognition of such complications may carry significant psychological impact. The aim of this study is to assess the illness cognition of Saudi patients diagnosed with CD and to identify clinical associations.Methods:Adult patients with CD were asked to complete an illness cognition questionnaire (ICQ) between January and December of 2019. Additional data was extracted from the medical records. The ICQ composed of three domains: Helplessness (6 items), acceptance (6 items), and perceived benefits (6 items). Descriptive statistics were used to summarize patient characteristics and a linear regression analysis was used to identify associations with the ICQ score.Results:A total of 88 patients were included, of which 55.8% were females, 18% were smokers, and 11.5% had undergone CD-related surgery. The mean age was 26.9 ± 7.7 years and the mean duration of disease was 54.7 ± 60.5 months. The mean score was 17.4 ± 3.6 for the helplessness domain, 13.4 ± 3.6 for the acceptance domain, and 13.5 ± 3.5 for the perceived benefits domain. We found associations between abdominal pain and acceptance (P = 0.048), extra intestinal manifestations and perceived benefit (P = 0.001), and treatment with mesalamine and helplessness (P = 0.03). In a linear regression analysis, albumin level was the only factor associated with helplessness (coef = 0.18, P = 0.048).Conclusions:A considerable proportion of Saudi patients diagnosed with CD generally reported a negative perception of their disease. Albumin level was associated with helplessness.

Efficacy of a Brief, Peer-Delivered Self-management Intervention for Patients With Rare Chronic Diseases

Patients coping with rare diseases need psychosocial support. To evaluate the efficacy of a brief, transdiagnostic, peer-delivered intervention for patients with rare diseases in addition to care as usual (CAU) compared with CAU only. In this 2-group randomized clinical trial conducted from October 5, 2017, to July 12, 2019, patients were recruited via specialized clinics and patient organizations across Germany and participated from home. The study included consecutive adult patients with neurofibromatosis type 1, Marfan syndrome, primary sclerosing cholangitis, and pulmonary arterial hypertension who have limited functionality because of the disease. Exclusion criteria were a life-threatening health status and ongoing psychotherapeutic treatment. Of 143 patients screened for eligibility with a semistructured telephone interview, 54 were excluded, and 89 were randomized: 45 patients were randomly allocated to the peer-delivered intervention group, and 44 to the control group; 87 patients (98%) completed the 6-month follow-up assessment. The analysis was performed using an intention-to-treat principle. Data cleansing and analysis were conducted between April 25, 2019, and February 13, 2020. The 6-week intervention consisted of a self-help book and telephone-based peer counseling in addition to CAU. The control group received CAU alone. Peer counselors received training, structured consultation guidelines, and supervision. The primary outcome was acceptance of the disease as assessed using the Illness Cognition Questionnaire (ICQ; mean sum scores range from 0 to 18, with higher values representing more acceptance) 6 months after the intervention. Secondary outcomes included self-reported coping strategies (Health Education Impact Questionnaire), illness cognition (ICQ and Illness Perception Questionnaire), depression severity (Patient Health Questionnaire 9-item depression scale), anxiety severity (Generalized Anxiety Disorder Scale), quality of life (12-Item Short-Form Health Survey), and social support (Social Support Questionnaire). Outcomes were assessed before the intervention, after the intervention, and at a 6-month follow-up. The mean (SD) age of the 89 participating patients was 46.3 (14.9) years; 59 (66%) were women. There were no group differences regarding baseline variables. All patients allocated to the intervention group completed the intervention. Six months after the intervention, but not directly after completing the program, the intervention group had significantly higher rates of acceptance (ICQ) of the disease (primary outcome) compared with the CAU group. Mean (SD) baseline ICQ scores were 9.61 (3.79) in the control group and 9.86 (3.40) in the intervention group. Mean (SE) ICQ scores at 6 months were 10.32 (0.42) for the control group and 11.79 (0.42) for the intervention group, with a significant mean difference of -1.47 (95% CI, -2.63 to -0.31; P = .01). Several secondary outcomes, including different coping strategies, social support, and mental quality of life, were significantly higher after the intervention compared with the control group. In this randomized clinical trial, a self-help and peer counseling intervention improved patients' acceptance of their rare chronic diseases. Self-management and peer support can efficiently address the unique care needs of patients with rare diseases. isrctn.org Identifier: ISRCTN13738704.

Factor analysis of the Korean version of the Illness Cognition Questionnaire for adolescents with chronic illness.

AimThe purpose of this study was to examine the reliability and validity of the Korean version of the Illness Cognition Questionnaire.MethodsA total of 237 adolescent Participants ages 13–20 years were collected from two hospitals for purposes of the study. The participants were diagnosed with blood cancer, congenital heart disease, paediatric rheumatoid arthritis, multiple sclerosis and diabetes mellitus.ResultsThe Illness Cognition Questionnaire is composed of three subscales and 18 items. Exploratory factor analysis and confirmatory factor analysis were performed for all 18 items. The data used in the exploratory factor analysis were obtained from 126 adolescents with blood cancer. The data used for confirmatory factor analysis were obtained from 111 adolescents who had chronic diseases. The three‐factor model of 18 items showed general fitness close to the standard but not a very good fit.ConclusionsThis study indicated that the Korean version of the Illness Cognition Questionnaire is reasonable to use for Korean adolescents with chronic illness. The authors recommend that the meaning of Item 10 be clarified from ‘I have learned to accept the limitations imposed by my illness’ to ‘I have learned to positively accept the limitations imposed by my illness’.

Illness cognitions associated with health-related quality of life in young adult men with haemophilia.

Knowledge on patterns of beliefs about the illness (illness cognitions) can provide insight into individual differences in adjustment to haemophilia. The current study aimed to identify (a) which sociodemographic and disease characteristics were associated with illness cognitions and (b) which illness cognitions were associated with health-related quality of life (HRQOL) in young adult men with haemophilia, besides sociodemographic and disease characteristics. Young adult men (18-30years) with haemophilia in the Netherlands participated in an online multicentre cross-sectional study. Participants completed the Pediatric Quality of Life Inventory Young Adult version (PedsQL_YA). Potential sociodemographic determinants were assessed with the Course of Life Questionnaire (CoLQ) and illness cognitions with the Illness Cognition Questionnaire (ICQ). Multiple linear regression analyses were performed to assess potential determinants of illness cognitions and HRQOL. Seventy young adult men with haemophilia (mean age 24.7years, SD 3.5) participated. Born outside the Netherlands (β -0.24) and >1 bleed past 6months (β -0.32) were associated with less acceptance of the disease. More acceptance was associated with better HRQOL in all domains: β 0.23-0.39. More helplessness was associated with worse total (β -0.30) and physical (β -0.42) HRQOL. Disease benefits, sociodemographic and disease characteristics were not associated with HRQOL. Illness cognitions are associated with HRQOL in young adult men with haemophilia. Early recognition and identification of illness cognitions are important to facilitate support and psychosocial treatment to optimize young adults' well-being. Extra attention is needed for young adult men with frequent bleeds because they are at risk of lowered levels of acceptance of the disease.

Acceptance, Perceived Benefits, and Helplessness among Coronary Heart Disease Patients Undergoing Treatment in A Different Ward

Background. One of the factors determining CHD patients' adherence to treatment is Illness Cognition (IC). IC is described as acceptance, perceived-benefits, and helplessness. This study aims to identify and compared IC in CHD patients treated in different wards. Method: This research used a descriptive quantitative method with a cross-sectional approach. The study population was CHD patients who were undergoing treatment at a referral hospital in West Java. Selection of respondents using consecutive sampling, and data collected within three months, using the Illness Cognition Questionnaire on 106 respondents. Data were analyzed using mean and frequency distribution. Furthermore, ICs were compared using the Kruskal Wallis Test. Results: The following are an average IC respondent based on different IC dimensions and ward. Dimensions of helplessness: High Care Cardiac Unit (HCCU) 16.1 (SD = 4.06); Regular ward 12.86 (SD = 4.95); Outpatient 14.05 (SD = 5); Cardiac-Rehabilitation (CR) 11.04 (SD = 3.52) with p = 0.013. Dimensions of acceptance: HCCU 14.00 (SD = 2.7); Regular-ward 18.26 (SD = 2.7); outpatient 19.34 (SD = 2.88); RJ 18.20 (SD = 3.47) p = 0.005. Dimensions of perceived-benefits of HCCU 18.00 (SD = 3.6); Regular-ward 19.96 (SD = 2.76); outpatient 20.95 (SD = 3.01); RJ 20.08 (SD = 3.46) p = 0.043. Conclusion: The worst ICs of all dimensions were owned by respondents who were undergoing treatment at HCCU. ICs with relatively better are seen in respondents who were undergoing treatment in outpatient and cardiac-rehabilitation. ICs in CHD patients differ in all dimensions and categories of the ward. Thus, patient acceptance at HCCU need to be increased and as well as participation in cardiac rehabilitation so that patient perceived-benefits increase.

Determination of illness cognition levels in patients with maxillofacial area defects.

The aim of this study was to measure the illness cognition of patients with defect in the maxillofacial region. Eighty patients participated in this study. Written informed consent was obtained from patients with maxillofacial area defect, and the patients were filled in with the guidance of the researchers. Illness Cognition Questionnaire (ICQ), forms measuring the illness awareness of the patients were completed. The study was conducted independently of demographic characteristics. The statistical software SPSS (Statistical Package for Social Sciences, Version 20, Chicago IL, USA) was used for calculations. At the end of the study, ICQ scores in patients with maxillofacial defect were as follows: There was a statistically significant intra class correlation of 88.6% (0.843-0.942) among the Helplessness scale scores of the participants. There was a statistically significant intra class correlation of 80.3% (0.728-0.863) among the Acceptance scale scores of the participants. There was a statistically significant intra class correlation of 0.752 % (0,657-0,827) among the Perceived benefits scale scores of the participants. Patients with maxillofacial defects will focus on the disease cognition "Helplessness" category. In patients with relationship maxillofacial defect, the rate of helplessness (88.6%) was higher than acceptance (80.3%) and perceived benefit (0,752 %).