Monique Heijmans

COPING AND ADAPTIVE OUTCOME IN CHRONIC FATIGUE SYNDROME: IMPORTANCE OF ILLNESS COGNITIONS

In this study, the relations between illness representations, coping behavior, and adaptive outcomes in chronic fatigue syndrome (CFS) patients (N=98) were examined. Following Leventhals self-regulation model, it was hypothesized that illness representations would be directly related to coping and, via coping, to adaptive outcome. The results showed patients who considered their illness to be a serious condition, who believed that they had no control over their illness, who saw little possibility for cure, and who believed their illness to have serious consequences to cope with their illness in a passive way, report higher levels of impairment in physical and social functioning and report greater problems in mental health and vitality. A series of regression analyses showed illness representations to be stronger predictors of adaptive outcome than coping scores. The implications of these findings for the treatment of CFS patients are discussed.

The role of patients' illness representations in coping and functioning with Addison's disease

Objective. To examine the relationship between illness representations, coping behaviour and adaptive outcome in patients with Addisons disease (AD). Design. Cross-sectional. Following Leventhals self-regulation model (Leventhal, Meyer & Nerenz, 1980), it was hypothesized that illness representations are directly associated with coping and, via coping, with adaptive outcome. Method. The illness representations held by 63 patients with a diagnosis of Addisons disease were explored using a questionnaire and a comprehensive interview, including questions on beliefs about the identity, course, cause, treatment possibilities and consequences of their illness, the coping strategies they use, and their physical and psychological well-being. Results. AD patients differ highly in the subjective experience of their disease. Patients who view their illness as a serious condition with both frequent and serious symptoms and consequences, patients who believe their illness is chronic, and patients who consider their illness uncontrollable were found to engage more in passive coping strategies and to report higher levels of disability with regard to physical functioning, social functioning, mental health and general vitality than those who believed the opposite. Regression analyses indicated that illness representations were better predictors of adaptive outcome than were coping scores. Conclusion. Illness representations seem to play an important role in functioning in Addisons disease. The implications of these findings for the design of health carerelated interventions for AD patients are discussed.

Dissimilarity in patients and spouses representations of chronic illness: exploration of relations to patient adaptation

Abstract In this cross-sectional study, the illness representations of patients suffering from Chronic Fatigue Syndrome (n = 49)and Addisons Disease (n = 52) and those of their spouses were compared. Couples generally held similar views with regard to the dimensions of illness identity and cause but disagreed on time-line. control/cure. and consequences of the illness. The effects of such dissimilarity in a couples illness representations on the patients coping behavior and adaptation were then examined. Dissimilarity was found to have a weak impact on coping and a rather strong impact on adaptive outcome. In general. minimization of the disorders seriousness by the spouse was found to have a negative impact on adaptive outcome, although this effect differed with the dimension of illness representation and the type of illness. These results demonstrate the importance of the role of significant others and their beliefs for patients coping and adaptation with chronic illness.

Illness perceptions in dialysis patients and their association with quality of life

The present study explored illness perceptions of end stage renal disease (ESRD) patients on both haemodialysis (HD) and peritoneal dialysis (PD) treatment, and their associations with quality of life. Leventhals self-regulation model (SRM) was used as a theoretical framework. Illness perceptions and quality of life were assessed with the IPQ-R and the SF-36 in 91 HD and 42 PD patients participating in the NECOSAD-study. Compared to HD patients, PD patients experienced more personal control and had a better understanding of the illness. Illness perceptions explained from 17 to 51% of the variance in quality of life scores. Perception of more symptoms, more consequences and lower personal control were associated with lower well-being. The concept of illness perceptions is useful in understanding the impact of ESRD and of dialysis treatment on quality of life. Interventions aimed at providing more knowledge about ESRD and dialysis, and provision of skills to coping with the illness and its consequences may improve quality of life in dialysis patients.

Measuring patient activation in the Netherlands: translation and validation of the American short form Patient Activation Measure (PAM13).

BackgroundThe American short form Patient Activation Measure (PAM) is a 13-item instrument which assesses patient (or consumer) self-reported knowledge, skills and confidence for self-management of one’s health or chronic condition. In this study the PAM was translated into a Dutch version; psychometric properties of the Dutch version were established and the instrument was validated in a panel of chronically ill patients.MethodsThe translation was done according to WHO guidelines. The PAM 13-Dutch was sent to 4178 members of the Dutch National Panel of people with Chronic illness or Disability (NPCD) in April 2010 (study A) and again to a sub sample of this group (N = 973) in June 2010 (study B). Internal consistency, test-retest reliability and cross-validation with the SBSQ-D (a measure for Health literacy) were computed. The Dutch results were compared to similar Danish and American data.ResultsThe psychometric properties of the PAM 13-Dutch were generally good. The level of internal consistency is good (α = 0.88) and item-rest correlations are moderate to strong. The Dutch mean PAM score (61.3) is comparable to the American (61.9) and lower than the Danish (64.2). The test-retest reliability was moderate. The association with Health literacy was weak to moderate.ConclusionsThe PAM-13 Dutch is a reliable instrument to measure patient activation. More research is needed into the validity of the Patient Activation Measure, especially with respect to a more comprehensive measure of Health literacy.

Functional, communicative and critical health literacy of chronic disease patients and their importance for self-management

OBJECTIVE To provide insight into the level of health literacy among chronic disease patients in the Netherlands, to identify subgroups with low literacy and to examine the associations between health literacy and self-management. METHODS Self-report questionnaires were sent to a nationwide sample of 1.341 chronic disease patients. The Dutch Functional Communicative and Critical Health Literacy scale (FCCHL), the Partners in Health scale (PIH) and Perceived Efficacy in Patient-Doctor Interactions (PEPPI-5) were used to assess health literacy and aspects of self-management. RESULTS In general, health literacy skills were good. A higher age, lower education, lower income, multi-morbidity and/or functional limitations were associated with lower levels of health literacy. Communicative and critical health literacy were related to some aspects of self-management but not to all. Functional health literacy was less important. CONCLUSION Communicative and critical health literacy play a role in successful self-management of chronic disease but the impact differs by context. Health literacy levels vary according to socio-demographic and disease characteristics of patients. PRACTICE IMPLICATIONS Health care professionals should tailor their information and support to the health literacy skills and personal context of their patients.

The stress of being chronically Ill: From disease-specific to task-specific aspects.

The assumption that disease-related stressors are exclusive for particular diagnoses characterizes many studies of chronically ill patients. In this study the perceptions of 1305 patients from 10 different chronic disease categories were compared with respect to a number of important stressors. Differences were found in the amount and type of stressors experienced, but these differences could not solely be explained by type of disease. Personal characteristics such as age, sex, education level, living situation, and illness duration were also important in determining the degree and type of stress experienced. The implications of these findings for stress/coping research as well as the clinical implications are discussed.

The Development of and First Experiences with a Behavioural Self-regulation Intervention for End- stage Renal Disease Patients and Their Partners

This article describes the development of an intervention programme for patients with end-stage renal disease (ESRD) and their partners. The programme is based on theories of self-regulation, social learning, and self-determination aimed at maintaining and increasing patients’ activities, including paid work, and sense of autonomy. The intervention was evaluated on its feasibility and first experiences among a group of 12 patients and partners. Results show that the intervention is feasible. The outcomes observed by the patients themselves are encouraging. The findings show that an approach in which cognitive, emotional, behavioural, and contextual aspects are integrated is promising. Areas of attention for developing and implementing interventions are discussed.

Structure and Determinants of Illness Representations in Chronic Disease: A Comparison of Addison's Disease and Chronic Fatigue Syndrome.

Although the clinical relevance of illness representations has been demonstrated in several studies, research on the structure and determinants of illness representations is rare. This article examines the illness representations of chronically ill patients, using a structured interview technique and taking chronic fatigue syndrome (CFS) and Addisons disease (AD) as examples. Considerable differences were found between the group of CFS patients (n = 98) and the group of AD patients (n = 63) with regard to their ideas about the identity, time line, control/cure , and consequences of their illness. Despite these differences, the pattern of correlations among these four dimensions of illness representation was found to be similar for the two groups. Moreover, the strength of the correlations points to the coherent nature of illness representations. The relations between the illness representations, personal variables, and disease- related variables were also explored. Regression analyses showed the dimensions of illness representation to be explained rather well by personal and disease-related variables. Disease-related variables were the most important predictors for the dimensions of identity and consequences; personal variables showed strong associations with time line and control/cure.

Perceived autonomy and self-esteem in Dutch dialysis patients: the importance of illness and treatment perceptions.

Compared to healthy people, end-stage renal disease (ESRD) patients participate less in paid jobs and social activities. This study explored the perceived autonomy, state self-esteem and labour participation in ESRD patients on dialysis, and the role illness and treatment perceptions play in these concepts. Patients completed questionnaires at home or in the dialysis centre (N = 166). Data were analysed using bivariate and multivariate analyses. Labour participation among dialysis patients was low, the average autonomy levels were only moderate, and the average self-esteem level was rather high. On the whole, positive illness and treatment perceptions were associated with higher autonomy and self-esteem, but not with labour participation. Multiple regression analyses demonstrated that illness and treatment perceptions explained 18 to 27% of the variance in autonomy and self-esteem. Perceptions of personal control, less impact of the illness and treatment, and less concern were important predictors. Our results indicate that dialysis patients’ beliefs about their illness and treatment play an important role in their perceived autonomy and self-esteem. Stimulating positive (realistic) beliefs and altering maladaptive beliefs might contribute to a greater sense of autonomy and self-esteem, and to social participation in general. Interventions focusing on these beliefs may assist patients to adjust to ESRD.