Lucia Snoei's research while affiliated with Leiden University Medical Centre and other places

Knowledge on cross-cultural quality of life (QOL) and illness perceptions may help women with breast cancer cope more effectively. The self regulation model (SRM) guided the current exploratory longitudinal pilot-study. Central to SRM is the perception of health threats and their effects on QOL. Illness perceptions and QOL were assessed in 22 Dutch and 21 Japanese patients with breast cancer who filled out questionnaires before, 1 week, and 8 weeks after the first chemotherapy course. The questionnaires assessed QOL and illness perceptions. Patients' scores were compared with groups of patients with other chronic somatic illnesses (asthma, diabetes). Patients in both samples reported major impact of chemotherapy on global health status, physical functioning, role functioning, emotional functioning, constipation and diarrhea. Differences between Japanese and Dutch patients were limited to social functioning and financial problems. Japanese patients expressed stronger concerns about their illness than Dutch patients. Results of the Japanese and Dutch patients with breast cancer differed from data in patients with asthma on consequences, timeline, concern and emotional response. Results of Japanese patients differed from patients with type 2 diabetes on timeline and concern, whereas Dutch patients differed on timeline and consequences. Japanese and Dutch breast cancer patients have-overall-similar illness perceptions and QOL responses and are aware of the typical characteristics of their disease. The results support the feasibility of cross-cultural psychosocial research in oncology and offer implications for clinical interventions which impact on self-efficacy to empower patients with breast cancer.

This study examined quality of life (QOL) and illness perceptions in Dutch and Japanese patients with non-small-cell lung cancer, thereby extending the body of knowledge on cultural differences and psychosocial aspects of this illness. 24 Dutch and 22 Japanese patients with non-small-cell lung cancer filled out questionnaires on three occasions: immediately before chemotherapy, 1 week later, and 8 weeks after the initial chemotherapy. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) assessed QOL, and the Brief Illness Perception Questionnaire (B-IPQ) illness perceptions. Scores on several QOL measures indicated (a) major impact of first chemotherapy sessions, and (b) some tendency to returning to baseline measures at 8 weeks. Differences between Japanese and Dutch samples were found on five EORTC QLQ-C30 dimensions: global health status, emotional functioning, social functioning, constipation, and financial difficulties, with the Dutch patients reporting more favorable scores. Regarding illness perceptions, Japanese patients had higher means on perceived treatment control and personal control, expressing a higher sense of belief in the success of medical treatment than Dutch patients. In both Japanese and Dutch patients, impact of chemotherapy on QOL was evident. Some differences in illness perceptions and QOL between the two samples were observed, with implications for integral medical management. Both samples reported illness perceptions that reflect the major consequences of non-small-cell lung cancer. Incorporating symptom reports, illness perceptions, and QOL into medical management may have positive consequences for patients with non-small-cell lung cancer.

To evaluate content, navigation, usability, and impact measurability of a prototype Internet-based self-management intervention for patients with ulcerative colitis. Analysis of 52 Internet diaries that were used in a six-month test trial. Analysis was done using an evaluation framework for eHealth applications that incorporates goals from theory and empirical studies on living with chronic illness, the software design industry, and health services research. Content of the diary covered the intended functions of the Internet-based self-management intervention. The evaluation led to several refinement suggestions concerning navigation, usability, and impact measurability of the Internet diary. Psychosocial, medical, and scientific content as well as interface and design are equally important in the development of effective eHealth interventions.

Patients with chronic obstructive pulmonary disease have perceptions of their illness and its management that determine their coping behaviors (e.g., adherence, self-management) and, consequently, their outcomes. This article reviews the empirical literature on illness perceptions in patients with COPD to provide clinicians with information regarding the potential utility of incorporating illness perceptions into clinical COPD care. A literature search in PubMed identified 16 studies examining associations between illness perceptions and outcomes in patients with COPD. Seven of the 16 papers were from US authors, followed by 3 each from the UK and The Netherlands, and one study each from Australia, Canada, and New Zealand. The first study was published in 1983, and the numbers of patients per study ranged fom 10 to 266. The illness perceptions were those delineated by two theoretical models (cognitive behavioral theory and the Common Sense Model), and they were assessed with open interviews and validated questionnaires. Outcomes were disability, quality of life, and psychological characteristics. The studies revealed clinically meaningful associations between illness perceptions and outcomes. Our review supports the incorporation of illness perceptions into clinical care for patients with COPD. The assessment of illness perceptions should be routine, similar to routine assessments of pulmonary function. Discussing and changing illness perceptions will improve COPD patients' quality of life and reduce their levels of disability. COPD-specific assessments ("diagnosis") of illness perceptions and COPD-specific intervention methods ("therapy") that help change inadequate and maladaptive illness perceptions are research priorities.

To review the topic of behavioural research on patients with COPD over the past 50 years in order to help inform clinical management and future research on psychosocial aspects of COPD. Narrative literature review. Nine orientations in behavioural research on COPD patients are identified and concisely examined: psychoanalytic approach, psychosomatics, neuropsychology, quality of life, psychomaintenance, patient education, coping and illness cognitions, self-management, and collaborative care. These approaches form a historical sequence of psychosocial perspectives on COPD, of successively increasing utility in COPD research and care. In the past 50 years behavioural research on COPD patients has evolved considerably. Over time, a trend for the patient to become the central actor in the management of the illness is discernable. Evidence-based reviews indicate that self-management offers COPD patients effective options for managing their illness, leading to positive outcomes such as reduced frequency of hospitalization, greater exercise tolerance, and enhanced quality of life. Future research should focus on how self-management skills can be incorporated formally into medical care. In addition to offering suggestions on how clinicians may be instrumental in improving self-management behaviour in COPD patients, and thereby improve care outcomes, we highlight the importance of gaining insight into the perceptions of patients of their own situation, and incorporating a respect for patient perspectives into the philosophy of care.

This article reviews an emerging area of research on patients with asthma: namely, illness perceptions and their relationships with various aspects of outcome. The article briefly introduces the Common Sense Model, outlining the relevance of how "lay" patients conceptualize symptoms, illness, and treatment. On the basis of a comprehensive literature search, nine empirical studies illustrating the relationships between illness perceptions and outcomes are discussed. It is concluded that further research should focus on assessing asthma-specific illness and treatment beliefs. Also, given the effects of intervention studies in illness perceptions in other patient categories, it is recommended that serious consideration be given to intervention studies focusing on eliciting and changing illness perceptions in asthma patients, especially in those whose self-management seems to be inadequate.

Sexual quality of life was examined in 55 outpatients with chronic obstructive pulmonary disease (COPD) and asthma, using disease-specific questionnaires. Compared to an age- and sex-matched norm group, male patients with COPD reported a significantly lower sexual quality of life on all dimensions of the questionnaire. Female patients with COPD reported a lower frequency of sexual intimacy and lower sexual quality of life overall. Patients with asthma reported sexual quality-of-life scores that were somewhat better than COPD patients but worse than the healthy control group. Patients reported that they did not discuss sexual quality-of-life issues with their physician. Sexuality needs to be discussed by the health care provider in the consultation in order to improve quality of life of patients with chronic respiratory disorders.

Research suggests that chronically ill patients and their partners perceive illness differently, and that these differences have a negative impact on patients' quality of life (QoL). This study assessed whether illness perceptions of patients with Huntington's disease (HD) differ from those of their partners, and examined whether spousal illness perceptions are important for the QoL of the couples (n = 51 couples). Partners reported that their HD-patient spouses suffered more symptoms and experienced less control than the patients themselves reported. Illness perceptions of patients and partners correlated significantly with patient QoL. Partners' beliefs in a long duration of the patients' illness and less belief in cure, were associated with patient vitality scores. Suggestions for future research emphasize the importance of qualitative research approaches in combination with cognitive-behavioural approaches.

To examine patients' pretreatment beliefs and goals regarding pulmonary rehabilitation. Qualitative study using semi-structured interviews. Interviews conducted at participants' homes. Twelve patients with chronic obstructive pulmonary disease who had been referred to a rehabilitation clinic. Patients' beliefs about pulmonary rehabilitation, self-set treatment goals and anticipated reasons for drop-out. Patients' beliefs about pulmonary rehabilitation comprised positive aspects (participation as an opportunity for improvement, a safe and multidisciplinary setting, presence of motivating and supporting patients) and negative aspects of exercising in a rehabilitation centre (e.g. disruption of normal routine, being tired after training, transportation difficulties, limited privacy and confrontation with severely ill patients). Four types of treatment goals were formulated: increase in functional performance, weight regulation, reduction of dyspnoea, and improvement of psychosocial well being. Four clusters of anticipated reasons for drop-out were identified: the intensity of the programme, barriers to attending (e.g. transportation problems, sudden illness and other duties/responsibilities), lack of improvement and social factors. Four different attitudes towards pulmonary rehabilitation could be distinguished: optimistic, 'wait and see', sceptic and pessimistic. Follow-up data revealed that whereas a pessimistic attitude (high disability, low self-confidence, many concerns) was related to decline, the 'sceptic' patients had dropped out during the course. Uptake and drop-out may be related to patients' perceived disabilities, expected benefits and concerns with regard to rehabilitation, practical barriers and confidence in their own capabilities.