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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.
... 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. ...
... 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. ...
Background:
The lower-risk (low and intermediate-1 risk based on IPSS) myelodysplastic syndrome (MDS) has a negative impact on patients' health-related quality of life (HRQoL). Patient Reported Outcomes (PROs) instruments, which are used to collect patients' HRQoL data, should have established content validity in the target population to ensure that the instrument is comprehensive and comprehensible. The present study was conducted to evaluate the content validity of the Quality of Life in Myelodysplasia Scale (QUALMS) and the Functional Assessment of Cancer Therapy-Anemia (FACT-An) PRO instruments in patients with lower-risk MDS.
Methods:
In this cross-sectional, qualitative study, 16 patients aged ≥18 years with lower-risk MDS, who were RBC transfusion dependent, literate and fluent in US-English were interviewed. Interviews were semi-structured comprising of two parts: concept elicitation (CE) explored symptoms and impacts important to patients, and cognitive debriefing (CD) assessed understanding and relevance of the QUALMS and FACT-An. A conceptual model was developed, which was used to map the concepts that emerged during CE onto the QUALMS and FACT-An to assess concept coverage and suitability of the instruments.
Results:
The median age of participants was 67.5 years (range: 51-91), with half being female (n = 8). Nine (56.2%) participants had intermediate-1-risk MDS and 10 (62.5%) were relapsed or refractory to erythropoiesis-stimulating agent treatment. Fatigue/tiredness (100.0%), shortness of breath (87.5%), weakness (81.2%), and low energy (75.0%) were reported most commonly and were the most bothersome symptoms as well. Of seven high-level HRQoL domains identified, activities of daily living (n = 16, 100.0%), physical functioning (n = 15, 93.8%), emotional wellbeing (n = 13, 81.3%), social functioning (n = 12, 75.0%), sleep disturbance (n = 9, 56.3%), and impact on work (n = 9, 56.3%) were the most commonly reported. For CD, the QUALMS and FACT-An were found to be mostly relevant and very well understood; response options were easy to use, and recall period was appropriate.
Conclusion:
Both QUALMS and FACT-An demonstrated a strong face and content validity in patients with lower-risk MDS, suggesting that these instruments are appropriate for assessing HRQoL in this population.
... 37,38 The author of one of the ongoing studies confirmed that this has not yet been published in full. 40 Two trials included patients with hematologic malignancies as well as patients with solid tumors or nonmalignant hematologic disorders. The authors were contacted because data could not be extracted for a malignant hematology "subgroup" from the reported information. ...
... There were six studies within seven citations eligible for inclusion within this review. One of these studies is due to start recruiting patients, 43 and the other has not yet been published in full 40 (Table S1 Appendix ...
Relatively minor bleeding (e.g., bruising and/or petechiae) may cause patient distress. This systematic review's objective was to assess whether bleeding affects health-related quality of life (HRQoL) or illness perceptions or representations (IPs) in patients with hematologic malignancies or myelodysplasia (MDS).
We searched, in full, 12 electronic databases (including CENTRAL, MEDLINE, and EMBASE) up to January 7, 2013, for eligible randomized controlled trials (RCTs), prospective cohort studies, and cross-sectional studies.
A total of 6247 studies were initially identified; 5945 studies were excluded on the basis of the abstract. A total of 302 full-text articles were evaluated independently by two reviewers; of these, six studies within seven citations were eligible for inclusion. Two studies are still in progress, four studies within five citations were included in this review (one RCT, one prospective observational study, one interview study, and one Web-based survey). None of the included studies were designed to assess the impact bleeding had on HRQoL or IPs. The Web-based survey and observational study used two new patient-reported outcome scales which specifically assessed patient distress or concern due to bleeding. The majority of patients within these two studies either did not experience bleeding or did not have severe thrombocytopenia.
There is insufficient evidence to demonstrate whether bleeding is a significant clinical problem that affects patients' HRQoL or IPs in either patients with MDS or patients with hematologic malignancies. Rigorously designed studies to assess the scale of this problem in both of these groups of patients are required.
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