The impact of myelodysplastic syndromes on quality of life: lessons learned from 70 voices.

BACKGROUND: Little is known about the impact of myelodysplastic syndromes (MDS) on the quality of life (QOL) of those living with the disease. OBJECTIVES: The purpose of this qualitative study was to explore this phenomenon. METHODS: Seventy patients with MDS participated in five focus groups conducted throughout the United States. Transcripts from recordings of focus group sessions were coded and emerging themes identified using thematic analysis. RESULTS: Findings revealed a multifaceted description of how MDS affects QOL. MDS was found to cause a substantial and sustained decrease in ability to function. QOL was adversely affected by work expended on managing the disease. The emotional impact was often viewed as more problematic than the physical impact; emotional reactions included shock, anger, depression, and anxiety. In contrast, spiritual well-being was often enhanced, with a renewed appreciation for life, relationships, and faith. CONCLUSIONS: Data from this study suggest that MDS has a substantial, often negative impact on patients' lives and clinicians should be cognizant of this impact. Attention must be directed at providing more comprehensive support for the patient throughout the illness trajectory. LIMITATIONS: The method of subject recruitment may have limited participation to individuals who are more proactive in obtaining information about their illness. The focus groups convened only once; thus, purposive sampling and repeated assessments were not possible.

Strategies for achieving transfusion independence in myelodysplastic syndromes.

Myelodysplastic syndromes (MDS) are a group of complex diseases of the myeloid stem cell that result in chronic cytopenias. In some instances, these disorders may progress to acute myeloid leukemia. Patients with MDS frequently experience chronic, symptomatic anemia, and many become dependent on chronic transfusions of packed red blood cells. However, long-term transfusion dependence has clinical and economic consequences, including a potentially negative impact on patients' quality of life (QOL). Recently, studies have investigated various strategies to reduce or eliminate transfusion needs in MDS patients. Supportive measures with hematopoietic growth factors such as erythropoietin are often less effective in MDS-associated anemia than in anemia from other causes, but some patients may benefit from this approach. Treatment with other agents, such as antithymocyte globulin, azacitidine, decitabine, thalidomide, and lenalidomide, has resulted in transfusion independence in some subsets of MDS patients. Nurses who care for patients with MDS should be aware of the impact of transfusion dependence on the patient's QOL, as well as the benefits and risks of the various other treatment options available to these patients. Such knowledge will enable the nurse to provide accurate, relevant information, so that patients can make informed choices regarding treatment options for MDS.

The importance of quality of life for patients living with myelodysplastic syndromes.

Myelodysplastic syndromes (MDS) are a group of myeloid stem cell clonal disorders characterized by a wide variation in illness trajectory and potential treatment. The physical, functional, emotional, social, and spiritual well-being of individuals with MDS can be affected by both disease and treatment-related factors. As a result, the quality of life (QOL) in patients with MDS may vary throughout the course of the illness. To date, most research exploring QOL in patients with MDS has been conducted as part of clinical trials evaluating the effectiveness of a therapeutic intervention. Although data from those studies are useful, they do not fully address the issues critical to maintaining or maximizing QOL. Oncology nurses are in a key position to assist patients with MDS to maintain their QOL. Findings from comprehensive QOL assessments will guide nurses in providing relevant interventions and evaluating their outcomes. In this manner, oncology nurses can assist their patients to maximize QOL while living with this challenging illness.

A randomized, clinical trial of education or motivational-interviewing-based coaching compared to usual care to improve cancer pain management.

PURPOSE/OBJECTIVES: To test the effectiveness of two interventions compared to usual care in decreasing attitudinal barriers to cancer pain management, decreasing pain intensity, and improving functional status and quality of life (QOL). DESIGN: Randomized clinical trial. SETTING: Six outpatient oncology clinics (three Veterans Affairs [VA] facilities, one county hospital, and one community-based practice in California, and one VA clinic in New Jersey)Sample: 318 adults with various types of cancer-related pain. METHODS: Patients were randomly assigned to one of three groups: control, standardized education, or coaching. Patients in the education and coaching groups viewed a video and received a pamphlet on managing cancer pain. In addition, patients in the coaching group participated in four telephone sessions with an advanced practice nurse interventionist using motivational interviewing techniques to decrease attitudinal barriers to cancer pain management. Questionnaires were completed at baseline and six weeks after the final telephone calls. Analysis of covariance was used to evaluate for differences in study outcomes among the three groups. MAIN RESEARCH VARIABLES: Pain intensity, pain relief, pain interference, attitudinal barriers, functional status, and QOL. FINDINGS: Attitudinal barrier scores did not change over time among groups. Patients randomized to the coaching group reported significant improvement in their ratings of pain-related interference with function, as well as general health, vitality, and mental health. CONCLUSIONS: Although additional evaluation is needed, coaching may be a useful strategy to help patients decrease attitudinal barriers toward cancer pain management and to better manage their cancer pain. IMPLICATIONS FOR NURSING: By using motivational interviewing techniques, advanced practice oncology nurses can help patients develop an appropriate plan of care to decrease pain and other symptoms.

The relationship between posttraumatic stress disorder, mood states, functional status, and quality of life in oncology outpatients.

CONTEXT: Oncology patients are at risk for developing posttraumatic stress disorder (PTSD) and other comorbid mood states, which are associated with decreases in functional status and quality of life (QOL). However, few studies have investigated the relationship between PTSD, other mood states, functional status, and QOL in oncology outpatients. OBJECTIVES: This study had four aims: 1) determine the percentages of patients with PTSD and partial PTSD; 2) evaluate for differences in demographic and clinical characteristics among patients with PTSD, partial PTSD, and no PTSD; 3) evaluate for differences in mood states, functional status, and QOL among the three PTSD groups; and 4) evaluate whether demographic and disease characteristics were predictors of PTSD. METHODS: As part of a larger clinical trial that evaluated the effects of a cognitive-behavioral intervention on cancer pain management, 289 adult oncology patients (M(age)=61.3, SD=11.6) completed self-report measures that assessed PTSD, other mood states, functional status, and QOL. RESULTS: Forty-five percent of the sample met the diagnostic criteria for PTSD (n=78) and partial PTSD (n=53) and were younger than those with no PTSD. Patients with PTSD had a significantly lower Karnofsky Performance Status, shorter time since diagnosis, higher ratings of mood disturbance, lower ratings of functional status, and lower QOL than patients with no PTSD. A lower Karnofsky Performance Status, fewer months since diagnosis, and presence of bone metastases predicted a higher likelihood of being classified as having PTSD. CONCLUSION: Early identification and interventions may mediate the onset of psychological distress and improve health outcomes.