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Chronic disease influences over 40 major life-changing decisions (MLCDs): a qualitative study in dermatology and
Z U Bhatti1, A Y Finlay, C E Bolton
1Centre for Socioeconomic Research, Cardiff School of Pharmacy and Pharmaceutical Sciences, Cardiff University, Cardiff, UK; Department of Dermatology and Wound Healing, School of Medicine, Cardiff University, Cardiff, UK.
Insights
Chronic diseases significantly impact major life-changing decisions (MLCDs), affecting career, relationships, and lifestyle choices. Understanding these impacts is crucial for effective patient management and support.
Area of Science:
- Medical Sociology
- Patient-Reported Outcomes
- Chronic Disease Management
Background:
- Chronic diseases profoundly affect patients' psychosocial well-being and major life-changing decisions (MLCDs).
- Limited understanding exists regarding the specific MLCDs influenced by chronic illness and their long-term consequences.
Purpose of the Study:
- To identify major life-changing decisions (MLCDs) influenced by chronic disease.
- To establish a clear definition for 'MLCDs' in the context of chronic illness.
- To propose support strategies for patients navigating MLCDs.
Main Methods:
- Qualitative analysis of individual interviews with dermatology patients and postal surveys from other medical specialties.
- Thematic categorization through an iterative coding-recoding process using NVivo8 software.
- Data from 308 evaluable responses were analyzed to conceptualize MLCDs.
Main Results:
- Chronic diseases influenced a wide spectrum of MLCDs, including career choice, employment, relationships, education, and lifestyle habits.
- Reported MLCDs varied between dermatology patients and other medical specialties, with younger individuals reporting more affected MLCDs.
- Forty-one themes were categorized into 18 MLCD categories, leading to a developed definition and suggested support strategies.
Conclusions:
- Chronic diseases exert a significant influence across a broad range of major life-changing decisions.
- MLCDs represent a novel and important dimension in assessing the overall burden of chronic disease.
- Enhanced clinician awareness of MLCDs is essential for comprehensive patient care and management.
Background:
Chronic disease not only impairs patients' psycho-social well-being but also influences major life-changing decisions (MLCDs). There is little information about the types of MLCDs affected and the long-term consequences.
Objectives:
The aims were to identify the MLCDs influenced by chronic disease, to define 'MLCD' and to suggest support strategies for patients taking MLCDs.
Methods:
Adult dermatology patients explained how their chronic disease had influenced MLCDs in individual interviews. Adult patients from other medical specialities gave similar information by postal survey. NVivo8 software was used for qualitative analysis of data. Themes were categorized through a coding-recoding iterative process.
Results:
There were 308 evaluable responses (male 55.2%; mean age = 51.8 years, mean disease duration = 19 years) from the 365 (55.7%) responses to the 655 patient invitations. These were used to generate themes to conceptualize 'MLCDs'. The most frequently reported MLCDs in the dermatology interviews concerned career choice (66%), job (58%), choice of clothing (54%), relationships (52%), education (44%), stopping swimming (34%), moving abroad (32%), not socializing (34%), wearing make-up (22%) and having children (22%). In the postal survey early retirement (40.6%), impact on job (29.4%), having children (24.8%), career choice (22.4%) and relationships (15.5%) were most commonly reported. The number of MLCDs reported by individuals was inversely related to age. Forty-one affected MLCD themes were grouped into 18 MLCD categories. A definition of MLCD was developed and strategies suggested to support patients.
Conclusions:
Chronic diseases influence a wide range of MLCDs. MLCDs are a novel domain in disease burden assessment. Clinicians' knowledge about this is important in patient management.
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