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June 2012, Supplement to Volume 16, Number 3



Patient and Family Resources for Living With Myelodysplastic Syndromes

Sandra E. Kurtin, RN, MS, AOCN®, ANP-C, Phyllis Paterson, RGN, RSCN, Dip Onc,

Sophie Wintrich, MA, Tracey Iraca, Audrey Ann Hassan, Deborah Murray, and Sue Hogan, AS


Primarily a disease affecting older adults, myelodysplastic syndromes (MDS) are a class of incurable myeloid malignancies with variable clinical presentation, treatment recommendations, and prognoses. Although effective communication between healthcare professionals and patients and their caregivers is a significant part of optimizing clinical outcomes, studies have shown that all three frequently have an incomplete understanding of MDS, its therapeutic options, and the fact that MDS is a malignancy. In addition, the advanced age of the patient population, high frequency of comorbidities, and variability of disease outcomes based on risk status require consistent communication across a wide number and type of healthcare providers as well as an individualized approach to patient and caregiver education. This article discusses these challenges and provides a number of resources designed to help educate healthcare professionals, patients, and caregivers.


Myelodysplastic syndromes (MDS) represent a heterogeneous group of myeloid malignancies with a peak incidence in the seventh and eighth decades of life. The disease is characterized by ineffective hematopoiesis with variability in clinical presentation, treatments, disease trajectory, and prognosis (Kurtin & Demakos, 2010). Although scientific discoveries have been robust, MDS remains largely an incurable disease. A number of studies have indicated that the leading cause of death in patients with MDS is related to the disease itself in more the 75% of patients (Dayyani et al., 2010). However, with the majority of patients being considered “elderly,” healthcare providers (HCPs), patients, and their caregivers often hesitate to pursue disease-modifying therapies based on chronological age alone, despite evidence showing positive effects on overall survival and quality of life (Kurtin, 2010; Life Beyond Limits, 2011). Additional factors noted to limit treatment options offered to the older adult population include fear of toxicity, limited expectation of benefit, or ageism (Carreca & Balducci, 2009; Kurtin, 2010). Patients are reluctant to pursue active treatment for similar reasons, as well as concern for the cost of treatment and the strain on caregivers (Kurtin, 2010).


In addition to confirming the low threshold for tolerating moderate adverse events in a predominantly older adult population, several surveys of patients and providers have underscored the ambiguity in describing MDS as a myeloid malignancy and a reluctance to offer disease-modifying treatments based on risk analysis (Kurtin & Demakos, 2010; Sekeres, 2011; Sekeres et al., 2011). As a result, patients often are unable to describe the characteristics of their disease, including their International Prognostic Scoring System risk category, blasts percentage, cytogenetic abnormalities, and how these attributes correlate with their treatment options and prognosis (Demakos & Kurtin, 2011; Sekeres et al., 2011). A minority of patients in these surveys had been told that MDS is a malignant disorder. Many oncology practitioners today may see fewer than 10 patients with MDS per year, and most locally available support groups for patients with cancer will not include a single patient with MDS.


Together, the heterogeneity of the disease, heterogeneity of older adults, limited provider familiarity with MDS, recent changes in therapeutic and supportive care strategies, and paucity of resources for patient and family support at a local level emphasize the need to identify currently available resources for patients with MDS and their caregivers. Perhaps the most important prerequisite to assist patients and their caregivers in facing the challenge of a cancer diagnosis is to understand the disease itself and what each patient may experience based on an individualized risk analysis and then to have a basic familiarity with appropriate resources for patient and caregiver support. Tools and strategies for clinical management of patients with MDS and considerations for quality of life in these patients are reviewed elsewhere in this supplemental publication.


Patient Resources on Myelodysplastic Syndromes


Several surveys of both patients and HCPs have provided some insight into the characteristics of patients with MDS, what patients with MDS understand about their disease, what they perceive as unmet needs, and what they feel are the optimal characteristics of HCPs. The epidemiologic characteristics of the disease in all surveys confirmed the prevalence of MDS in patients older than age 65 years (Demakos & Kurtin, 2011; Ma, Does, Raza, & Mayne, 2007; Sekeres, 2011). That fact is important when considering the best approach to patient education and support given the trend toward online resources.


The MDS Foundation provides a patient advocacy and outreach program, which includes a full-time patient liaison available via telephone and e-mail. Patient phone calls to the MDS Foundation, together with patient surveys conducted as a part of patient and caregiver support programs supported by the MDS Foundation and the United Kingdom MDS Patient Support Group, have provided insight into the educational and supportive care needs of patients with MDS. Members of the International Nursing Leadership Board for the MDS Foundation serve as facilitators for the sessions. The most commonly asked questions in the sessions have been used as a template for the development of patient and caregiver education and support materials (see Appendix A).


Expectations of Patients and Providers


Working with patients facing an incurable disease requires time, compassion, clarity of message, and resilience on the part of HCPs. The shift toward survivorship care planning and personalized medicine places additional responsibilities on the oncology HCP to maintain a current working knowledge of a variety of conditions and treatment standards (Litton et al., 2010). Given the age of most patients with MDS, comorbid conditions are common, often requiring involvement of a number of specialists in addition to a primary care physician (Kurtin & Demakos, 2010). With the limited number of patients with MDS seen in a general oncology practice, the older age of most patients with MDS, and the provision of the majority of care in the outpatient setting where contact with the provider may be limited to 15–20 minutes per visit, clarity and consistency of information provided to patients and caregivers across all HCPs is an imperative and, yet, a daunting task. In addition, patients with cancer identify knowledgeable HCPs and adequate time for questions as desirable attributes of HCPs, emphasizing the need to employ a variety of educational strategies across disciplines.


Most patients facing a cancer diagnosis want to understand their disease, prognosis, available treatment options, potential adverse events, and expected duration of therapy (Protiere, Moumjid, Bouhnik, Le Corroller Soriano, & Moatti, 2011; Rodin et al., 2009). A majority prefer to play a collaborative role in decision making (Brown, Parker, Furber, & Thomas, 2011). Effective patient-caregiver-HCP communication has been shown to improve patient and caregiver participation in decision making and self-care (Brown et al., 2011; Rodin et al., 2009). However, discordant expectations between patients and providers with regard to primary responsibility for survivorship care remain a challenge (Aubin et al., 2011; Cheung, Neville, Cameron, Cook, & Earle, 2009). Current literature supports an individualized approach to patient and caregiver education, with consideration of learning styles, cultural diversity, age, gender, treatment options, and prognosis (Cheung et al., 2009; Fujimori & Uchitomi, 2009; Rodin et al., 2009). Empowering the patient and caregiver to play an active role in patient care using a multidisciplinary approach with a consistent message used in an honest and empathetic way is perhaps one of the greatest tools for positive patient-caregiver-HCP communication.


Preparing the Patient and Family


Development of a consistent evidence-based description of MDS as a myeloid malignancy, defining risk-adapted treatment options including supportive care, and identification of available resources and programs for patient and caregiver support are critical to ensuring optimal outcomes. Adapting strategies to incorporate international variances in treatment approaches based on available therapies and resources is necessary. Individualizing support for each patient based on available resources including social support, availability of caregivers, financial resources, lifestyle, and personal choices for care and learning styles will promote the best outcome. Incorporating a multidisciplinary team approach including HCPs, social services, financial assistance counselors, support groups, and patient navigators is recommended.


Local, regional, national, and international programs and organizations focused on MDS, hematologic malignancies, and general cancer resources (including financial assistance programs) provide important patient and caregiver resources (see Figure 1). Publications specific to the patient with MDS provide additional patient and caregiver support for those patients without access to or not comfortable with online resources (see Figure 2). As with many diseases in older adult populations, reliance on family members or friends to maintain the prescribed treatments, including travel to appointments, may place additional stressors on the patient and their support network. Careful evaluation of functional status, ability to tolerate treatments, effect of disease progression, and general overall health and family dynamics can provide the best opportunity for support of these patients. Assessment of activities of daily living may allow detection of deficiencies or deficits that require early intervention before they become problematic (Kurtin & Demakos, 2010).


Based on risk status, general health, and performance status, experimental therapeutic options should be presented as appropriate. Important points when considering patients for clinical trials also include the ability of the patient to understand the risks of experimental trials and the ability to give consent. Clinical trials also may provide the only opportunity for interventional therapy for patients who have failed currently approved therapies. Table 1 provides a summary of only a few of the ongoing active clinical trials in MDS.




The majority of clinical management of patients with MDS is provided in the outpatient setting and requires active participation of patients and caregivers for monitoring adverse events and adherence to treatment. Empowering patients and caregivers by providing clear, consistent, individualized information about their MDS, treatment plan, prognosis, and strategies for support is critical to effective management of patients. Despite the incurable nature of MDS, patients may live many months or years with this disease and will benefit from the numerous available resources. A compassionate, well-informed, and realistically optimistic oncology professional can make a world of difference to patients with MDS and their caregivers.


Implications for Practice


·         Myelodysplastic syndromes are a class of incurable diseases requiring compassionate, clear, and consistent communication among healthcare providers (HCPs), patients, and caregivers.

·         The majority of patients and caregivers want to understand their disease, prognosis, available treatment options, expected duration of therapy, potential adverse events, and strategies for taking an active role in their care.

·         Effective patient, caregiver, and HCP communication will promote patient and caregiver participation in the decision-making process and self-care.




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Sandra E. Kurtin, RN, MS, AOCN®, ANP-C, is a hematology/oncology nurse practitioner at the University of Arizona Cancer Center, an adjunct clinical assistant professor of nursing, and a clinical assistant professor of medicine, all at the University of Tucson in Arizona; Phyllis Paterson, RGN, RSCN, Dip Onc, is a myelodysplastic/myeloproliferative diseases clinical nurse specialist at Addenbrooke’s Hospital of Cambridge University Hospitals, NHS Foundation Trust, in Cambridge, England; Sophie Wintrich, MA, is a patient liaison and chief executive of the MDS UK Patient Support Group at the Rayne Institute in King’s College Hospital in London, England; and Tracey Iraca is a grants coordinator, Audrey Ann Hassan is a patient liaison, Deborah Murray is a patient coordinator, and Sue Hogan, AS, is an operating director, all at the MDS Foundation, Inc., in Yardville, NJ; and all are writing on behalf of the MDS Foundation International Nurse Leadership Board. The authors received editorial support from Stacey Garrett, PhD, of MediTech Media, which was funded by Celgene Corporation. The authors are fully responsible for the content of and editorial decisions about this article and received no financial support for its development. Celgene Corporation provided funding for the publication of this article but had no influence on its content. Kurtin is a consultant for Celgene Corporation, Novartis Pharmaceuticals, and Millennium Pharmaceuticals, and is on the speaker bureaus for Celgene Corporation and Novartis Pharmaceuticals. The content of this article has been reviewed by independent peer reviewers to ensure that it is balanced, objective, and free from commercial bias. No financial relationships relevant to the content of this article have been disclosed by the independent peer reviewers or editorial staff. Kurtin can be reached at sandra.kurtin@uahealth.com, with copy to editor at CJONEditor@ons.org. (Submitted January 2012. Accepted for publication January 29, 2012.)