Investigation of the Impact of Myelodysplasia (MDS) From the Patients' Perspective

Abstract

5049 Introduction: 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. A qualitative study was conducted 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 to 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 with low to intermediate-1 risk MDS. Illness information for the sample is shown in Table 1. 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. Nine fundamental needs were affected by MDS; subsistence, safety and security, affection, understanding, participation, leisure, self-actualisation, identity and independence. Conclusions: The study was successful in developing outcome models describing how MDS affects symptoms, activity limitations and QoL. Many symptoms were experienced including several in addition to those directly associated with anaemia. Functioning was also frequently affected. A wide range of QoL issues were identified with several fundamental needs impaired to some extent. Following this study a large bank of potential items has been created that will aid the development of MDS-specific outcome scales assessing symptoms, activity limitations and QoL. Disclosures: McKenna: Celgene Ltd: Consultancy, Research Funding. Twiss:Celgege Ltd: Consultancy, Research Funding. Wilburn:Celegene Ltd: Consultancy, Research Funding. Crawford:Celegene: Consultancy, Research Funding. Loth:Celgene Ltd: Employment.

Content validity of patient-reported outcomes for use in lower-risk myelodysplastic syndromes

“…Shortness of breath was the second most common and bothersome symptom reported by participants, also consistent with the findings of prior qualitative research [ 25 , 43 , 47 ]. Weakness and low energy were also reported to be most bothersome by a few patients.…”

“…Other symptoms that were reported by patients included pain, bruising, bleeding, infections, fever, and heart palpitations. In line with the literature, participants described a significant impact of these symptoms on ADLs and physical functioning [ 31 , 41 , 43 , 46 , 48 , 49 ]. Most of these impacts were attributed to fatigue/tiredness, shortness of breath, weakness and low energy, further supporting the finding that participants reported these symptoms as most bothersome.…”

“…Among impact concepts, only limitations in self-care ( n = 1, 6.2%), gardening ( n = 2, 12.5%) and short-term memory ( n = 1, 6.2%) emerged in the final set of interviews. Similarly, difficulties with housework and chores (inside and outside of the house) and self-care have been described in the MDS literature [ 43 ], supporting them as relevant to the MDS patient experience. Impacts to short-term memory, however, were not.…”

Does bleeding affect patient‐reported outcome measures in patients with myelodysplasia or hematologic malignancies: a systematic review

“…There were six studies within seven citations eligible for inclusion within this review. One of these studies is due to start recruiting patients, and the other has not yet been published in full (http://onlinelibrary.wiley.com/doi/10.1111/trf.12441/suppinfo, available as supporting information in the online version of this paper). Of the completed studies, there was one RCT, one prospective observational study, one interview study, and one Web‐based survey (Table ).…”

“…Two authors responded and provided further unpublished information . The author of one of the ongoing studies confirmed that this has not yet been published in full …”