BACKGROUND: Little research is currently available on the impact of MDS from the patients' perspective. Where research has been conducted it has predominantly used generic cancer outcome measures. Such measures do not provide an accurate assessment of MDS patients as they miss important aspects of the condition.
AIMS: To conduct a qualitative study with MDS patients to investigate how their lives are affected by the condition.
METHODS: Qualitative, unstructured interviews were conducted with patients. Verbatim transcripts of the interviews were analysed thematically to assess the impact of MDS in terms of symptoms experienced, activity limitations and quality of life (QoL). Emergent themes were identified, clustered and harmonised. Investigation of issues related impairments and activity limitations were guided by the World Health Organizations (WHO) classification of outcomes related to health and injury. Investigation of QoL issues was guided by the needs-based model of QoL (Hunt SM, McKenna SP. The QLDS: A scale for the measurement of quality of life in depression. (1992). Health Policy 22; 307-319).This model identifies several core fundamental needs that are important to an individual’s QoL and adjustment to society. Illness affects QoL by preventing the satisfaction of these needs.
RESULTS: The sample included 30 participants (male 17 (56.7%); mean (SD) age 65.5 (11.3) years; mean (SD) time since diagnosis 5.0 (4.5) years with low to intermediate-1 risk MDS. 30% of the sample were receiving transfusions and 33.3% were not receiving any treatment. The analyses identified several symptoms. The most frequently reported symptoms were; fatigue (97%), breathlessness (60%), increased infections (60%), sleep problems (53%), cognitive problems (50%), temperature fluctuations (47%), increased bruising (40%) and bleeding (10%), pain (30%), depression (23%) and anxiety (10%). Several common functions were affected by MDS, including; standing, walking, bending, lifting, carrying and rising from sitting. Various more complex functions were also affected such as the ability to socialise, shop and do jobs around the house. A total 33 QoL issues were identified. Quality of life issues affected six fundamental needs; physiological, safety and security, social, affection, esteem, cognitive. The QoL impact of the condition is shown in figure 1.
CONCLUSIONS: The study was successful in developing outcome models describing the symptoms, activity limitations and QoL issues associated with MDS. Following this study a large bank of potential items has been created that will aid the development of MDS-specific outcome scales for these three different kinds of outcome.
