Measuring the influence of chronic diseases on health-related major life changing decisions and development of a patient-based novel instrument for its measurement
Bhatti, Zaheer Uddin
The permanent nature of chronic disease may impair patients' psycho-social and physical well being, may change their attitude towards life goals and influence major life changing decisions (MLCDs) over time. Very little information is available in the literature about the long term impact of chronic diseases, particularly their influence on MLCDs. The aim of this study was to investigate the influence of chronic diseases on MLCDs and to develop a standardised tool for use across all chronic conditions to assess the impact of disease on MLCDs. 675 patients (100 from 6 specialties: cardiovascular, rheumatoid, diabetes, cystic fibrosis, chronic obstructive pulmonary disease, nephrology and 75 from dermatology) from the University Hospital of Wales, Cardiff and University Hospital Llandough, Llandough were invited to take part. The data was obtained through surveys, interviews and focus group discussions and this was reduced to core items through 'content analysis'. In a further study, 225 patients from the seven specialties were asked to complete the MLCDP (version la) and, factor analysis was applied to confirm the breadth and depth of the allocated domains and to determine construct validity of the MLCDP. 385 (57%) patients of 675 took part in the first phase of the study. Themes and statements generated from 316 (82%) evaluable responses (postal survey=258, individual interviews=50, focus group=8) were used for the development of the MLCD Profile. The most frequently reported MLCDs concerned early retirement, having children, job, career choice, relationships, housing, moving abroad and education. The correlation between the patients' age and the total number of reported MLCDs was significant (rs = -0.46, p=<0.001, n=308) showing negative relationship. In total, 41 affected MLCD themes were identified and grouped into 15 core MLCD categories. The working definition of health-related 'Major Life Changing Decision' was also developed. The 45-item draft profile was grouped into six MLCD domains. 19 clinicians took part in the 'content validation' stage and there was good agreement among the panel members for their ratings of language clarity, relevance, completeness and scaling. (Interclass correlation coefficient=0.71, p=<0.0001, CI=0.61-0.78, kappa coefficient=0.81, p=<0.0001, 0=0.69-0.93). This led to a new 41-item version of the MLCDP (version la), covering five MLCD domains: education, job/career, family/relationships, social and physical. 210 patients (30 from each of the seven specialties) were recruited into the second phase completed the MLCDP and data were analysed using factor analysis. The Cronbach's alpha value of 0.8 indicated good reliability. Several items were made redundant as a result of factor analysis this analysis supported the evidence of construct validity. Item prevalence ranking helped to retain conceptually important items at this stage. This profile was easy to complete for most patients (n=131, 97%) and mean completion time was 5.7 minutes. A 32-item version of the MLCDP (version 2) was finally developed, which requires future examination of its other psychometric properties. The MLCDP is potentially of benefit in alerting clinicians to the long term impact of a chronic disease on patients, and as a tool to assess the true burden of chronic diseases on individuals' long term quality of life. Clinicians' knowledge about the influence of chronic diseases on MLCDs is important to provide better and timely guidance to patients, to support better treatment decisions and eventually to lead to better health outcomes. This study also proposed strategies for patients to consider when taking MLCDs. Such support might result in more appropriate decision-taking and improved health outcomes.
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