The development and validation of the major life changing decision profile (MLCDP)

Abstract

BackgroundChronic diseases may influence patients taking major life changing decisions (MLCDs) concerning for example education, career, relationships, having children and retirement. A validated measure is needed to evaluate the impact of chronic diseases on MLCDs, improving assessment of their life-long burden. The aims of this study were to develop a validated questionnaire, the “Major Life Changing Decision Profile” (MLCDP) and to evaluate its psychometric properties.Methods50 interviews with dermatology patients and 258 questionnaires, completed by cardiology, rheumatology, nephrology, diabetes and respiratory disorder patients, were analysed for qualitative data using Nvivo8 software. Content validation was carried out by a panel of experts. The first version of the MLCDP was completed by 210 patients and an iterative process of multiple Exploratory Factor Analyses and item prevalence was used to guide item reduction. Face validity and practicability was assessed by patients.Results48 MLCDs were selected from analysis of the transcripts and questionnaires for the first version of the MLCDP, and reduced to 45 by combination of similar themes. There was a high intraclass correlation coefficient (0.7) between the 13 members of the content validation panel. Four more items were deleted leaving a 41-item MLCDP that was completed by 210 patients. The most frequently recorded MLCDs were decisions to change eating habits (71.4%), to change smoking/drinking alcohol habits (58.5%) and not to travel or go for holidays abroad (50.9%).Factor analysis suggested item number reduction from 41 to 34, to 29, then 23 items. However after taking into account item prevalence data as well as factor analysis results, 32 items were retained. The 32-item MLCDP has five domains education (3 items), job/career (9), family/relationships (5), social (10) and physical (5). The MLCDP score is expressed as the absolute number of decisions that have been affected.ConclusionsThe 32-item (5 domains) MLCDP has been developed as an easy to complete generic tool for use in clinical practice and for quality of life and epidemiological research. Further validation is required.

Chronic disease influences over 40 major life‐changing decisions (MLCDs): a qualitative study in dermatology and general medicine

“…The participation rate among the patients from non‐dermatology specialties was lower than for dermatology patients. The experience of non‐participants may have differed from study participants; however, subsequent work supports that the results of this study are generalizable.…”

“…39 The suggestions of strategies for patients complement the need of awareness of this concept among health care professionals. The development of a generic tool 38 to measure MLCDs, based on the findings of this study, will enable researchers to better assess patients and their overall burden of disease.…”

Broader concepts of quality of life measurement, encompassing validation

“…The term ‘the Three Dimensions of QoL impact’ (Now, Family and Long‐term) was suggested to emphasize the importance of this temporal aspect of QoL (Fig. ): a template to record MLCDs has also been developed.…”

Real‐world effect of biologics on quality of life in psoriasis

“…suggest that life course impairment caused by psoriasis may explain why some patients continue to experience QoL impairment despite major clinical improvement. BADBIR was set up before this concept, or the impact of disease on major life‐changing decisions was considered, but future psoriasis registry developers might consider tracking this long‐term burden. Whatever the explanation, this is another example of why guideline developers need to temper their reliance on ‘the highest ranking evidence’ with the cold reality revealed by registries such as BADBIR.…”