Dr. Schlairet is Associate Professor, Valdosta State University, College of Nursing, Valdosta, Georgia.
The author discloses that she has no significant financial interests in any product or class of products discussed directly or indirectly in this activity, including research support.
Address correspondence to Maura C. Schlairet, EdD, MSN, RN, CNL, Associate Professor, Valdosta State University, College of Nursing, 1300 North Patterson Street, Valdosta, GA 31698; e-mail: firstname.lastname@example.org.
Empirical evidence identifying the unique experiences and needs of older cancer survivors is essential to guide both clinical care and research (Association of Community Cancer Centers [ACCC], 2009; Christopher, 2006; Cope, 2006; Payne, 2006). Recognizing that 60% of cancer survivors are older than 65 (Christopher, 2006; Cope, 2006; Institute of Medicine [IOM], 2007a, 2007b), the median age of occurrence is 68, and that most cancer care is delivered in community settings (ACCC, 2009; IOM, 2007b), nurses must consider needs assessment for delivery of survivorship care from a comprehensive life span perspective (ACCC, 2009).
Little research exists on older adults receiving survivorship care in community cancer care settings. Survivorship concerns most frequently identified by older survivors cared for in all types of cancer settings include physical impairments, functional disabilities, and psychosocial problems (Hewitt, Rowland, & Yancik, 2003; IOM, 2008). In addition, older adults experience higher cancer mortality rates compared with younger people (Cope, 2006) and demonstrate age-related patterns of impact to cancer (Blank & Bellizzi, 2008) that younger people may not display (Matulonis, 2004). Some suggest older adults are less likely to be affected in either positive or negative ways by a cancer experience (Blank & Bellizzi, 2008). Yet, do older adult survivors receiving care in community cancer care settings contend with the same needs/symptoms and distress as described for older survivors cared for in other settings? Some have suggested using a gerontological approach to exploring survivorship issues, viewing age as a proxy for difference in well-being, and ultimately, survivorship outcomes (Blank & Bellizzi, 2008).
The purpose of this article is to report the findings of a secondary analysis of a parent project designed to assess the unique supportive care needs (physical, spiritual, social, emotional, and other) and associated distress among older adults receiving cancer survivorship care in a community cancer center. In the current project, data were revisited to consider age as a proxy for difference in well-being, managing stress, grief/loss, and managing difficult emotions. This article describes the parent project, secondary analysis of older adults’ physical needs and associated distress, and associations with other survivorship needs.
The Parent Project
This was a secondary analysis of data from a single-center survey design study to assess needs and distress of adult cancer survivors receiving care in a community cancer center located in the southeastern United States. Data were available from a convenience sample of adults older than 18 receiving survivorship treatment or follow-up care from a cancer center who volunteered to complete a survey. During a 16-week time frame, potential volunteers were identified by the cancer center clinical trials coordinator at the beginning of each day through review of electronic cancer center schedules. Volunteers responded to an invitation offered on arrival to the cancer center during a regularly scheduled clinic visit. Institutional Review Board approval was received for the parent study, and completion and submission of the anonymous survey was considered respondent consent.
In the parent project, 826 surveys were distributed to patients seen in follow up at the cancer center. Of those, 307 surveys were returned for a response rate of 37%. Analysis revealed a mean age of 64 for that sample. Reflection on that mean age led to the present project—an opportunity to re-explore data from the 190 individuals meeting older adult age criteria (60 and older) (IOM, 2007a). Institutional Review Board approval was received for the secondary analysis of anonymous, archived data.
The instrument used in the parent study, the Survey of Needs, was an unpublished tool developed by the Cancer Education Center of the Mayo Clinic Cancer Center in Rochester, Minnesota to identify survivors’ interest in receiving education on 38 cancer care topics. The instrument authors used Cancer Patient Education Network review to establish content validity of the initial instrument. The survey was then modified (Pearlman Cancer Center, n.d.) using the City of Hope Quality of Life Model (Ferrell, Hassey Dow, & Grant, 1995) as the framework for categorizing needs/symptoms into four domains (physical, social, psychological, and spiritual). An additional category of “other” was added for concerns outside the four areas. The rationale for survey modification was a desire to identify needs and associated distress caused by the cancer and its treatment.
The modified instrument consisted of 50 items reflecting 19 physical effects, 10 social issues, 10 emotional aspects, 5 spiritual issues, and 6 other issues associated with cancer survivorship scored on a 5-point Likert scale. Survivors were instructed to indicate whether they were experiencing a need/symptom and to rate the level of associated distress (0 = no distress; 5 = extreme distress). Higher scores reflected greater numbers of needs/symptoms and perceptions of greater distress associated with those needs/symptoms. Reliability was assessed using a Cronbach’s alpha co-efficient of 0.96 calculated across the subscales.
To explore the unique supportive care needs and associated distress among older adults receiving cancer survivorship care (N = 190), descriptive and correlational statistics were used in secondary analysis of archived survey data for descriptive purposes. This approach fit well with this work, given the goal in the current project was to better describe needs and distress among older adults, rather than comparing outcomes between age groups. Secondary data analysis in nursing research has been identified as a useful exploratory technique that may generate results leading to new understandings (Nicoll & Beyea, 1999).
Of the 190 individuals considered in the secondary analysis, the median age of older survivors was 70 (age range = 60 to 94). Sixty-two percent were women. Almost 12% of older survivors were unable to report their specific cancer diagnosis. Half of the survivors had been diagnosed with breast (30%), lung (11%), or colorectal (10%) cancers. Remaining diagnoses included prostate cancer, lymphoma, and leukemia (6% each); head/neck cancers (5%); ovarian cancer (4%); stomach cancer (2%); liver, pancreas, and bladder cancers (1% each); myeloma, carcinoid syndrome, and sarcoma (1% each); cervical, esophageal, and uterine cancers (0.5% each); and unknown primary tumors (0.5% each).
Needs and Associated Distress
The needs/symptoms most frequently reported by older survivors were fatigue, fear of recurrence, sleep disturbance, and balance/walking/mobility difficulties. Of the 50 possible needs/symptoms, 16 were identified by at least half of all older adults (Table 1). On average, older adults reported experiencing 10 physical effects, 4 social issues, 5 emotional aspects, 1 spiritual issue, and 3 other issues; however, mean distress scores associated with the five subscales were low, ranging from 0.8 to 1.4.
Table 1: Most Frequent Needs/symptoms Identified by Older Survivors Receiving Care in a Community Cancer Care Setting (N = 190)
Physical Needs and Distress: A Closer Look
Significant moderate to strong positive correlations at the p = 0.01 level were observed between both (a) the number of physical needs/symptoms reported by older survivors and (b) physical distress scores and reported difficulty maintaining well-being, managing long-term effects of treatment, and managing stress; fear of recurrence; living with uncertainty; and difficulty coping with grief/loss and managing emotions (Table 2).
Table 2: Correlations Between Physical Needs/symptoms and Other Aspects of Cancer Survivorship Among Older Adults Receiving Care in a Community Cancer Care Setting (N = 190)
Older adults self-reported a need for and interest in information and education on cancer survivorship topics. Of greatest interest to older survivors was information on physical effects, which appealed to more than 75% of survivors. A preference for information in written format was observed (56%), with fewer older adults interested in classroom sessions (6%), or video-based delivery formats (9%). A slight preference for receiving information from cancer survivors (23%), rather than from health care providers (20%), was also observed.
Although mean distress scores were low, older adults in this study clearly experienced survivorship-related needs/symptoms. Of the 11 most frequently reported survivorship needs/symptoms, 7 originated from the physical effects category, and significant correlations were observed between physical needs/distress and reported difficulty managing survivorship issues such as stress, grief/loss, emotions, and well-being. Fortunately, older adults reported interest in information on cancer survivorship issues.
Needs and Associated Distress
Self-reported needs of older adults receiving survivorship care in this community cancer care setting are consistent with existing literature describing the survivorship experience of older adults cared for across a variety of cancer care settings. The survivorship concerns most frequently reported by older adults in this study have been previously described as physical impairments, functional disabilities, and psychosocial problems common to survivorship (Hewitt et al., 2003; IOM, 2008). Among older adults with cancer, Payne (2006) observed a variety of physical symptoms and cancer treatment effects, in addition to other age-related problems and comorbid processes.
Age has been recognized as a risk factor for elevated need among survivors (IOM, 2008; Maunsell, Brisson, & Deschênes, 1992). In a survey of older adult colorectal survivors, Ramsey, Berry, Moinpour, Giedzinska, and Andersen (2002) found persistent symptoms 5 or more years following diagnosis. While Deimling, Bowman, Sterns, and Wagner (2004) found that 40% of older adult survivors continued to experience at least one cancer-related symptom and 10% reported three or more symptoms, in the current study, 50% of older survivors in this community care setting reported an average of 16 cancer-related needs/symptoms.
Physical Needs and Distress
Although viewing age as a proxy for difference in well-being and other survivorship outcomes has been described (Blank & Bellizzi, 2008), significant correlations were observed in the current study between the number of physical needs/distress and aspects of survivorship, such as well-being and coping. Regardless of age, difference in maintenance of well-being throughout survivorship is likely a multifactorial issue; yet, “survivors with fewer physical symptoms are just much better off in many other aspects of their lives” (ACCC, 2008, p. S7).
The survivorship phase and follow-up/surveillance phases are documented as periods of increased vulnerability to distress (National Comprehensive Cancer Network [NCCN], 2007). Benyamini, McClain, Leventhal, and Leventhal (2003) studied health perceptions of retirement community residents and found that older survivors felt more vulnerable to cancer and that a positive history of cancer influenced quality of life and fear of recurrence. Recurrence, a fear well-described in the literature, was reported by more than 73% of older adults in the current study, yet distress levels reported here were similar to expected distress symptoms as described in oncology practice guidelines (NCCN, 2007). Some have suggested that older survivors fare better in coping with their disease when compared with younger patients (Blank & Bellizzi, 2008; Deimling et al., 2004; Jansen, van Weert, van Dulmen, Heeren, & Bensing, 2007).
In the current study, vigorous interest in education and information on survivorship issues was observed among older adults, with an overwhelming majority of survivors expressing interest in education on physical issues. In an overview of the literature on older survivors’ needs, Jansen et al. (2007) found the majority of studies identified older adults’ interest in information on physical effects of disease.
Findings in this study align with literature describing a preference for survivorship information and education in written format among patients of all ages (IOM, 2007b; Rutten, Arora, Bakos, Aziz, & Rowland, 2005). Although Jones and Courneya (2002) observed that 85% of cancer survivors had a preference for face-to-face counseling and class formats, for some cancer survivors, especially older adults, transportation issues have been identified as barriers to participation (Demark-Wahnefried, Peterson, McBride, Lipkus, & Clipp, 2000).
Because this was a secondary analysis, the author was limited to variables used in the parent study. Clearly, other variables that were not available may have been important in understanding needs and distress associated with cancer survivorship as experienced by older adults. In addition, data were collected from self-selected survivors receiving care in a community cancer center serving one region of the southeastern region of the country. As such, findings in the current study must be interpreted in light of recognized challenges involved in secondary analysis of data (Corti, Witzel, & Bishop, 2005). Given the single-site, single-survey design and small sample, statistical analysis beyond descriptive and correlational techniques was not prudent (Mochmann, n.d.), and generalizing findings beyond the studied population would be inappropriate. However, a strength of this analysis was the author’s familiarity with all phases of data collection associated with the parent study.
Given the predicted degree of the cancer burden among older adults (IOM, 2007a), nurses working in all settings must be able to clearly identify and be prepared to manage the multifaceted needs of older survivors. Changes that often accompany aging, across factors such as physiological, developmental, and life events, may influence the impact of cancer, and awareness can help nurses better recognize, understand, and respond to older adults’ survivorship needs. Blank and Bellizzi (2008) describe this as a gerontological or life span perspective on survivorship and suggest nurses use this type of lens to better view needs of older survivors.
Results of this study highlight the need for meticulous assessment of older survivors’ experiences related to physical symptoms and attention to symptom management. Nursing assessment for symptom identification and goal-setting targeting physical symptoms associated with survivorship (ACCC, 2008, 2009) represent the standard of care yet may be operationalized differently in community cancer care settings where survivorship programs may not exist.
Nurses caring for older survivors must assess survivorship-related distress. When good coping skills have been identified, nurses can promote additional development. For example, survivors can be guided in identifying and reflecting on positive effects of cancer and areas of personal growth associated with the survivorship experience.
Nurses must identify and meet older adults’ need for information on survivorship issues—such as physical effects of disease and treatment—to improve symptom identification, management, and development of proactive health behaviors among older adults. Nurses working in community cancer care settings may want to consider barriers to education, such as transportation issues, when planning survivorship care for older adults.
Lessons learned in this project from the perspectives of both parent study and secondary analyses are important for gerontological nurses working to understand older survivors’ unique needs and to develop interventions to meet those needs. Comparing needs of older adults with other age groups—the approach taken in the parent study—may not tell the story needed to discern older cancer survivors’ real issues and concerns. In community cancer care settings, where well-developed survivorship programs may not exist, needs assessment of older survivors is an essential first step in survivorship care. Given a paucity of research on older adults receiving survivorship care in community cancer care settings, additional research exploring the unique needs of these older survivors is warranted.
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Most Frequent Needs/symptoms Identified by Older Survivors Receiving Care in a Community Cancer Care Setting (N = 190)
|Fear of recurrence
|Managing long-term effects of treatment
|Living with uncertainty
|Defining a new sense of normal
|Coping with grief/loss
Correlations Between Physical Needs/symptoms and Other Aspects of Cancer Survivorship Among Older Adults Receiving Care in a Community Cancer Care Setting (N = 190)
||Difficulty Maintaining Well-Being
||Managing Long-Term Effects of Treatment
||Difficulty Managing Stress
||Fear of Recurrence
||Living with Uncertainty
||Difficulty Coping with Grief/Loss
||Difficulty Managing Emotions
|Number of physical needs and symptoms
|Physical distress score