Issues in Adult Blood Cancer Survivorship Care

Accepted Manuscript Issues in Adult Blood Cancer Survivorship Care Kelly G. Bugos , MS, ANP-C, RN PII:

S0749-2081(14)00093-X

DOI:

10.1016/j.soncn.2014.11.007

Reference:

YSONU 50677

To appear in:

Seminars in Oncology Nursing

Please cite this article as: Bugos KG, Issues in Adult Blood Cancer Survivorship Care, Seminars in Oncology Nursing (2015), doi: 10.1016/j.soncn.2014.11.007. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

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Issues in Adult Blood Cancer Survivorship Care

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Kelly G. Bugos, MS, ANP-C, RN Nurse Practitioner and Manager of Stanford Cancer Survivorship Program Stanford Cancer Center 875 Blake Wilbur Drive Stanford, CA. 94305-5827 [email protected] 650-724-5235

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OBJECTIVES:

To describe the current literature and future directions of survivorship care for

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the adult blood cancer population including unique features, identification of

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needs, practice guidelines, care models and the implications for nursing. DATA SOURCES:

Peer Reviewed Literature, Government and National Advocacy Organization

CONCLUSION:

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Reports, Professional Organization Guidelines

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Adult blood cancer survivors are a heterogeneous population that often receives

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complicated treatments to live a longer life. Survivorship needs among this population are often unmet throughout the cancer care continuum. The limited research literature and guidelines point to survivorship care strategies from the day of diagnosis to enhance long-term outcomes and improve quality of life. IMPLICATIONS FOR NURSING PRACTICE:

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Nurses are experts in symptom management and central to preventing, detecting, measuring, educating and treating the effects of cancer and its treatment.

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Moreover, nurses are key to implementing strategies to support blood cancer survivors, families and caregivers from the day of diagnosis to the last day of life.

Nursing Care

Supportive Care

Hematologic Malignancies Blood Cancer Survivors

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Blood Cancers

Survivorship Care Planning

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Cancer survivorship

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KEYWORDS:

Hematological malignancies, sometimes referred to as “blood cancers”, account for 9.5% of all cancers [1]. Sixty subtypes of hematological malignancies arising

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from the myeloid and lymphoid cell lines are mainly classified as lymphoma,

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leukemia and myeloma [2]. Standard treatment often consists of ‘watchful waiting’, symptom management, intensive therapy including chemotherapy, immunotherapy, surgery, radiation therapy, and hematopoietic stem cell transplant, or a combination of approaches over time.

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Five year survival rates for hematological malignancies continue to rise: 71% of people with lymphoma, 59% of people with leukemia and 45% of people with

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myeloma are alive five or more years after diagnosis [3]. Despite increasing longevity among survivors of hematological malignancies, there is limited

literature, inadequate identification and few guidelines to address the needs of

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this population.

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Definitions

The descriptive terms of cancer survivor and cancer survivorship care are varied. There is a complexity of meaning of survivorship among people who experience

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cancer and institutions providing their care. Cancer survivorship is commonly conceptualized as starting at diagnosis [4,5]. Cancer survivorship care is typically

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provided during the post-treatment phase, including psychosocial and physical recovery, adjustment to changes, maintaining general health and re-integration

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into normal daily life [6].

The conceptual difference between the phase of survivorship beginning at the time of diagnosis and survivorship following curative treatment creates conflict in defining the best time and way to provide survivorship care, especially to people

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who are challenged by an incurable cancer. Survivors of chronic leukemia, indolent lymphoma and multiple myeloma often balance the hope of remission

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with the knowledge that they may not be cured of their cancer and face survivorship issues while on chronic therapy. Survivors of acute leukemia, Hodgkin lymphoma and aggressive forms of lymphoma can have complex,

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combination therapy including hematological cell transplant with curative intent,

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resulting in prolonged recovery and substantial long-term and late effects. Myelodysplastic syndrome is considered a malignancy [7] but many who live with

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it do not consider themselves to have cancer.

Perhaps, the diverse nature of hematological malignancies and its treatment

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contributes to the wide range of feelings and beliefs adult blood cancer survivors express about the term cancer survivor. Based on their individual interpretations

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of the term and its relevance to their identity, these survivors may reject or embrace the title [8]. The question remains, how best to describe the experience of living with and beyond cancer and provide the supportive care necessary for optimal quality of life [8].

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Survivor Needs Some specific needs of adult blood cancer survivors have been described in the

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literature. These include psychosocial needs, financial needs and physical needs. Psychosocial Needs

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A systematic review of seventeen studies to determine unmet psychosocial needs

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of people with blood cancer, identified psychological and information needs, most notably fear of recurrence throughout the course of illness [9]. Survivors in these studies desired more information and more positive relationships with family members and the health care professionals involved in their care. Information

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and psychological needs were greatest at the time of diagnosis and during treatment, including treatment effectiveness, effects on family, ability to have

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children and concerns about paying for care. The number of needs was lower after treatment; however more of their needs were unmet. A single unmet need

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in the post-treatment setting, like fatigue or anxiety, was hypothesized to be more likely to cause distress [9, 10].

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In a cross-sectional population based comparative study to assess the needs of adult blood cancer survivors living in Australia and Canada, the most prevalent

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concern (18%) reported by 437 survivors was ‘dealing with feeling tired’ [2]. There was no statistical difference between countries, cancer type, age or time

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since diagnosis.

In a survey of 718 long-term acute leukemia, Hodgkin and non-Hodgkin

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lymphoma survivors, five to forty years from diagnosis treated at a single institution, 18% reported high levels of fatigue and 10% of participants had moderate to severe impairment in functioning [11]. There were no statistically

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significant differences in fatigue levels or levels of functioning between cancer types. The authors found a decline in the negative impact of cancer among long-

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term survivors, perhaps due to changed expectations and social roles [11].

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Among younger adults treated for non-Hodgkin lymphoma, three studies reported higher levels of sexuality and/or fertility needs [12-14] and one study found 61% wanted more information about fertility [13].

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Financial Needs Financial concerns are a recurring theme in the limited literature about the unmet

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needs of adult blood cancer survivors. A survey study of 268 adult blood cancer survivors diagnosed in the previous three years in Australia showed health care

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related expenses were a concern, particularly the need to take time off work and difficulty paying bills related to cancer [15]. The cross sectional study of

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Australian and Canadian blood cancer survivors also showed health care related expenses were a concern even in a single payer health care system [2]. Cancer survivors living in a non-metropolitan area were 17 times more likely to report

[15].

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location and financial barriers to care compared to those in metropolitan areas

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In a review of eight studies focused on factors connected with work outcome for

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survivors of hematological malignancies, no single factor such as age, diagnosis, treatment, education, income, marital status and mental health was significantly associated with work outcome [16]. A qualitative study of 50 adult blood cancer survivors one year from therapy described the aiding and impeding factors of returning to work [17]. Supportive employers and flexible work time helped survivors return to work: fatigue, sun sensitivity and physical work impeded 8

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successful resumption of work [17]. Those who did not return to work described a loss of self-worth and meaningful social relationships. [17]. No studies highlight

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the effect of cognitive changes and diminished immunity on the ability to return

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to work.

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Physical Needs

There is a paucity of research that identifies the incidence and effective management strategies for long-term and late effects experienced by adult blood cancer survivors. Potential treatment related effects and life expectancy are

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described for three subpopulations: Hodgkin lymphoma, non-Hodgkin lymphoma and hematopoietic cell transplant recipients [18-20]. Immunodeficiency inherent

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to the biology and treatment of hematological malignancies are sometimes reported from small studies about infections related to single treatments or

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disease. The long-term effects of the most common treatments - chemotherapy, immunotherapy, radiation- must be extrapolated from the literature for all cancer survivors [21-23].

Evidence Based Guidelines for Survivorship Care Long-term and Late Effects

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The only standard recommendations specifically focused on the care of the adult blood cancer survivor population is the National Comprehensive Cancer Network

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(NCCN) guidelines for monitoring for long-term and late effects of Hodgkin

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lymphoma including breast screening for second cancers [24].

Survivorship care guidelines from national professional organizations like NCCN

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[25] and the American Society of Clinical Oncologists (ASCO) [26] recommend management strategies for long-term effects common to all cancer survivors. The Oncology Nursing Society (ONS) offers evidence-based interventions for cancer

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and treatment related effects called Putting Evidence into Practice (PEP) [27]. NCCN survivorship guidelines contain symptom specific care (see table 1),

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recommendations for preventive health and a list of informational resources for cancer survivors and health care providers [25]. The NCCN task force on bone

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health in cancer care recommends strategies for preventing, monitoring and treating osteoporosis in adult cancer populations including blood cancer survivors [28].

ASCO recently released survivorship guidelines [26] focus on symptoms commonly encountered by blood cancer survivors (see table 1). These guidelines

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are in agreement with ONS Putting Evidence into Practice (PEP) recommendations [27] (see table 1). Only ONS PEP offers recommendations about caregiver strain

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and burden [27]. Age

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Leukemia and lymphoma are diseases predominantly of the old and the young [29]. The bimodal population has different needs and responds differently to

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support options [15, 30]. NCCN guidelines for senior adult populations [31] include the comprehensive geriatric assessment tool that can help with treatment choices and identification of support needs. The NCCN supportive care guidelines

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for the AYA population [32] identifies specific psychosocial issues, recommends interventions, and includes monitoring strategies for late effects and second

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cancers.

Surveillance for Other Cancers With the exception of the NCCN guidelines for Hodgkin lymphoma and AYA survivors, recommendations on when and how to screen for other cancers are

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limited to guidelines for the general population published by the American Cancer

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Society [33] and United States Preventive Services Task Force [34].

Vaccinations

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Vaccinations for adult cancer survivors are recommended by the Center for

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Disease Control (CDC) [35] and included in the NCCN survivorship guidelines [25]. There is consensus about annual influenza vaccination [36]; tetanus, diptheria and pertussis (Tdap); and human papillomavirus (HPV) vaccinations [35]. The CDC recommends a series of pneumococcal vaccinations for lymphoma, leukemia and

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myeloma survivors, which are in general agreement with the NCCN survivorship guidelines [37]. Recommendations differ about varicella zoster vaccination

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following HCT [25, 38]. A complete schedule of revaccination post-HCT is included

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in the CDC guidelines [38].

To date, there are no specific recommendations for blood cancer survivors on routine monitoring of skin changes, vision or dental care; risk based strategies for

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monitoring of hormone dysfunction, cardiovascular disease; or baseline

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measurement of cognitive function, functional status or sleep/wake cycles.

Nursing Care

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Nursing care is ultimately driven by patient need to achieve and/or maintain psychological, social and physical well-being. Oncology nurses have been

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instrumental in implementing and providing care to cancer survivors [39]; often providing the essential elements- survivorship care plan, care coordination with primary care providers and cancer team, screening for new cancers and

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surveillance for recurrence [40].

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As a measure of oncology nurse knowledge, ONS members (470, 5% of all invited) responded to an online survey of educational needs about cancer survivorship

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care [41]. Self-reported knowledge of cancer survivorship care increased with years of work experience. Those who worked five or fewer years in oncology reported statistically significant lower knowledge scores than those who worked in oncology for more than five years [41]. Knowledge about fatigue, anxiety, fear of recurrence; hope and palliative care was rated high. Knowledge scores and

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interest in learning more about practical matters related to finances were lowest, suggesting that topics like access to care, employment, insurance and financial

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issues related to cancer are perceived to be outside of their expertise or best handled by another profession. In most areas, nurse knowledge, perceived

patient need and questions from patients were well aligned. Exceptions were

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genetics, sexual health and dysfunction, insurance, financial and legal issues.

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These topics were associated with low interest despite a relatively high perceived need for information to assist patients [41]. To meet the needs of adult survivors of blood cancers, oncology nurses require more education about these elements

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of survivorship care.

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Models of Survivorship Care

Survivorship care models typically focus on people who are in remission years

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after therapy. This approach often does not address the needs of blood cancer survivors who may not live treatment- or disease- free for long periods of time.

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The Quality Oncology Practice Initiatives (QOPI) [42] and Commission on Cancer (CoC) standards [43] suggest that the best time to start clinical survivorship care is

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soon after initial treatment ends. A survivorship care plan within three months of treatment end introduces the primary concepts of survivorship care:

coordination, interventions for the consequences of cancer and treatment,

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surveillance for late effects, health promotion and disease detection [39] to the

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forefront of survivors recovery of treatment and removes the barrier of prognosis, even if surveillance of cancer recurrence remains with the cancer

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physician.

There are various models of long-term survivorship care [44, 45]. One model that

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allows survivorship to be an extension of the treatment team’s care is the embedded nurse practitioner model [46]. This model has been adapted to provide

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meaningful care to adult blood cancer survivors in parallel with the treatment team at the start of maintenance therapy or post-treatment surveillance [40, 47]. Other models of care include nurse navigators and cancer survivorship providers separate from the treatment team. Long-term, shared care models with primary

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care providers is an emerging strategy that may serve blood cancer survivors

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needs well [5, 48].

An estimated 85% of North Americans have access to the Internet [49]. The

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growing comfort and use of the internet may enable a telemedicine approach to serve the needs of survivors who are young, work during the day, are fatigued,

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prefer anonymity and/or have limited access to a cancer center. A population based survey of blood cancer survivors in Australia found participants were likely to access the Internet for information (62%) and for emotional support (28%). The

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probability of using the Internet for support was associated with feeling anxious

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and being employed [30].

Adult blood cancer survivor acceptance and participation in cancer survivorship

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services may vary. In a population based survey study in Australia, methods of treatment decision making varied [50]. Of the 268 participants (32% response rate), 45% preferred a passive role with decisions made by physicians, 30% preferred collaboration and 25% preferred an active role, making treatment

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decisions with the help of a physician. Younger and more educated participants

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were more likely to prefer an active role [50].

Treating physician recommendation to visit with cancer survivor specialists may

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influence some survivors’ willingness to attend. Survivors who prefer to make their own treatment decisions may be comfortable referring themselves to

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survivorship services or attending without the strong endorsement of their

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physician.

From the Day of Diagnosis

Chronic hematological malignancies like CML, CLL and low grade lymphomas may

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require ongoing treatment, or may not be considered curable, rendering them

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ineligible for survivorship care in current care models.

Several organizations and more cancer centers embrace the definition of cancer survivorship from the time of diagnosis in a practical way. The National Coalition for Cancer Survivorship (NCCS), the Oncology Nursing Society (ONS), and

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the National Association of Social Workers (NASW) produced the Cancer Survival Toolbox™ [51] which includes an audio program of practical tools designed to

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support survivors of Chronic Myelogenous Leukemia, Chronic Lymphocytic Leukemia, Multiple Myeloma and Non-Hodgkin Lymphoma.

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Cancer centers such as Stanford Health Care offer complementary care

throughout the cancer experience [52]. Mindful meditation, relaxation strategies,

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expressive writing, healing touch and art therapy improve the mind-body connection and can help adult survivors of blood cancer manage multiple needs

FUTURE DIRECTIONS:

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like fatigue and fear of recurrence.

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New models of survivorship care designed to encourage clinical integration,

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improve communication, and enhance coordination of care are emerging. Parallel care through the cancer continuum including specialty practices such as palliative care [40] provide blood cancer survivors with the care they want and need at the most opportune time.

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Survivorship care teams are challenged to measure and describe not only the services they provide but also the value they add. Some suggested metrics

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include measures of patient reported levels of distress, number and severity of cancer and treatment effects, survivors’ perceived abilities to manage symptoms, description of unmet needs and re-establishment of care with primary care

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providers. Long-term, measures of a healthy lifestyle like blood pressure, weight,

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glucose and cholesterol; adherence to recommended screening for early detection of secondary cancers can be used as quality indicators of survivorship

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care, and when published, contribute to the growing body of knowledge.

Until there is substantial evidence supporting the specific needs of each

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hematological malignancy group, guidelines for survivorship care from NCCN and

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ASCO can be applied to blood cancer survivors.

IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses are experts in managing many issues common to blood cancer survivors. Expansion of nursing knowledge to include all elements of survivorship

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care- practical, psychosocial and physical- will help adult blood cancer survivors live well with and beyond cancer.

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Oncology nurses are central to preventing, detecting, measuring, educating and treating effects of cancer and its treatment. Moreover, they are key to

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implementing strategies to support blood cancer survivors, families and

so they remain central to our care. CONCLUSION:

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caregivers. The challenge is to integrate this expertise into professional standards

Adult blood cancer survivors are a heterogeneous population that often receives

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complicated treatments to live a longer life. Survivorship needs among this population are often unmet throughout the cancer care continuum. The limited

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research literature and subsequent guidelines point to survivorship care strategies from the day of diagnosis to enhance long-term outcomes and improve

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quality of life.

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ACKNOWLEDGEMENTS:

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Thanks to Gillian Kumagai, MLIS, AHIP, Stanford Health Librarian for her dedicated

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literature search.

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Table 1 Evidence-Based Guidelines for Management of Long-Term and Late Effects of Cancer and Treatment

Anxiety, Depression

Anxiety, Depression

ONS Putting Evidence into Practice27

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ASCO Survivorship Guidelines 26

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NCCN Survivorship Guidelines 25

Bone changes 28

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Chemotherapyinduced peripheral neuropathy

Pain Sexual function

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Sleep changes

Fatigue

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Fatigue

Cognitive impairment Constipation Diarrhea Dyspnea Fatigue Hot flashes Lymphedema Pain

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Cognitive impairment

Skin reactions Sleep changes

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