Patient care navigation at the Billings Clinic Cancer Center spans the continuum of care from outreach efforts targeted at early detection through survivorship care planning. Care navigation can be defined [ Read More ]
April 2011 VOL 2, NO 2
Needs of Older and Elderly Cancer Survivors
Marietta Stanton, PhD, RN, CMAC, NEA, BC, CCM
A self-administered questionnaire was distributed to a convenience sample of cancer survivors (N =
237) attending an annual cancer survivors’ day organized by a community cancer center. Responses were used to assess the prevailing physical, psychological, spiritual, and social needs of cancer survivors and to determine whether those needs varied according to age. Fear of recurrence
was the greatest psychosocial concern across all age-groups. For the 89% of cancer survivors who
were aged 51 years and older, fatigue was the predominant physical concern. Older survivors were
less concerned with genetic counseling and finances than their younger counterparts. The findings
suggest survivorship programs for older patients should place more emphasis on addressing physical and psychosocial needs. They also point to the importance of conducting additional research to differentiate between the needs of older and younger cancer survivors. Almost 12 million people in the United States are cancer survivors, with more than 60% considered elderly (≥65 years).1 Survivorship is increasingly recognized as a distinct, important phase of cancer care, prompting interest in developing strategies to support and enhance the lives of cancer survivors. 2 Econo mou says survivorship encompasses the physical, psychological, social, and spiritual issues associated with cancer from the moment of diagnosis to death. The purpose of survivorship care is to preserve or improve the health and quality of life of a person given a cancer diagnosis; family, friends, and caregivers are recognized as part of this experience.3
The survivorship program model implemented at a particular facility depends on its resources, geographic location, and type. A survivorship program initiated after the active phase of treatment might offer a one-time visit, consist of several visits, or assume the provision of oncologic care in lieu of the patient returning to their oncologist. Programs can be delineated further into disease-specific, multidisciplinary, or needsbased (ie, psychosocial or physical). Regardless of the model used, the Institute of Medicine states that the primary goals of survivorship care are to reduce the incidence of and ameliorate symptoms resulting from treatment; to surveil patients for secondary cancers, recurrences, and the risks for late effects from cancer or treatment; to diagnose and treat late effects of cancer; to provide coordination between specialists and other providers to ensure that all the patient’s health needs are met following a cancer diagnosis; and to educate survivors on their risks and follow-up care needs.4
The National Action Plan for Cancer Survivorship focuses on preventing secondary cancers and recurrences, promoting appropriate management of symptoms following diagnosis and treatment, minimizing preventable pain, mitigating disability and psychosocial distress, and helping survivors and families access resources and community support to cope with their disease. 5 Although information about survivorship programs continues to expand, limited information is available about specific survivorship needs for elderly Americans and whether they differ from the needs of younger or middle-aged cancer survivors.
Sachs-Ericsson and colleagues found a predictive correlation between the perception among community-dwelling elders that their basic needs were not being met and the risk for decreased physical function.6 Ganz found that promoting health and aggressive management of comorbid conditions enhanced the health and quality of life for elderly cancer survivors.7 Bowman and colleagues found that older cancer survivors believed their physicians were too focused on their cancer care and treatment and failed to consider other physical concerns.8 Although these studies illustrate that paying attention to the special needs of elderly cancer survivors might have a profound effect on their general health, quality of life, and sense of well-being, they do little to identify those needs or assess how they compare with the needs of younger patients.
Cancer and its treatment present many personal and physical challenges, some of which appear more prevalent among elderly patients. Elderly patients might also have vastly different recovery goals—physical, psychological, social, and spiritual— than their younger counterparts.9 People at an advanced age often have comorbidities that interfere with or complicate recovery. They sometimes lack financial stability or resources, which can contribute to increased levels of stress and a sense of hopelessness, complicate recovery, and/or substantially reduce their quality of life.9 The elderly typically have decreased physical stamina compared with younger cancer survivors, making them more susceptible to profound fatigue. In addition, elderly patients are often more dependent on others for assistance and might require help with activities of daily living. Health providers need to be cognizant of the special needs of elderly patients and learn how to identify members of this population who are especially vulnerable. Being aware of age-dependent differences is critical to optimizing outcomes for cancer survivors.
This study examined the special needs of cancer survivors, especially the needs of elderly survivors. By examining the data from the survey, we sought to identify information about the needs of this population.
A convenience sample of cancer survivors attending an annual cancer survivors’ day were asked to complete a survey. The survey targeted the physical, psychosocial, social, and spiritual needs of all cancer survivors in attendance, many of whom were aged 65 years and older. There were no exclusion criteria; anyone attending the meeting had the option of completing the survey. The discussion of this survey analysis for educational endeavors was requested and approved by the institutional review board for the regional medical center hosting the survivorship program.
The survey instrument was constructed by a focus group comprised of oncology service staff and cancer survivors convened for the purpose of constructing the instrument for the community cancer center’s survivors’ day event. Several oncology service staff were also cancer survivors, although none of them completed the survey during the event. The oncology service staff conducted a literature review before convening the focus group and developing the instrument. The items on the survey were created after this literature review and then were examined by the focus group.
The items contained in the instrument were not intended to be an exhaustive list of issues. The instrument incorporated the major survivorship issues highlighted by the literature review and later by the focus group. No reliability or validity information concerning the survey instrument was available because this was its original implementation. It was surmised that the survey had face validity based on the unique composition of the focus group and the congruence of the survey content with information found in the literature. The 1-page survey was distributed to attendees of the cancer survivors’ day at a booth offering a back massage tool as a gift for the completion of the survey. Com - pletion and submission of the survey was voluntary. The completed surveys were deposited by the participants in a collection bin at the back of the meeting room at the close of activities. The survey consisted of a Likert-type scale, where survivors were asked to rate their level of concern about each item on a scale from 0 (no concern) to 5 (extreme concern). Items included on the Likerttype scale portion of the questionnaire were divided into 4 general categories: physical effects, social issues, psychosocial effects, and spiritual issues. The instrument used appears in the e-Appendix (see www.AONNonline.org/e-appendix).
The items in each of the 4 categories were generated by the members of the focus group. Physical effects of cancer survivorship included fatigue, pain, sleep disturbances, body-image changes, and memory/concentration issues. Psychosocial issues dealt with psychological sequelae associated with cancer survivorship, including living with uncertainty, fear of recurrence, and managing the stress associated with cancer survivorship. Psychosocial issues included statements regarding family and friends, and the impact of the diagnosis, treatment, and survivorship on those relationships. Support resources including survivorship support group availability was also included in the items for this category. Items for the spiritual and religious domain included statements about feeling alone, isolated, and helpless. The social issues category included items that seem to affect individuals as well as survivors as a group, that is, reimbursement, cost of treatment, advanced directives, and living wills.
The survey also asked survivors if there were adequate education, support, and counseling services for family members and/or caregivers. Fertility was determined by the focus group to be an important social issue for younger age-groups, especially after certain types of treatment. The instrument was meant to capture the major issues for cancer survivors in the local community and compare them with national issues and trends. An open-ended question asked respondents to list needs not included in the survey, and an optional question inquired how they preferred to receive information.
Data were collected and analyzed using standard descriptive statistical techniques, including frequency distributions. Items within each of the 4 categories were ranked according to frequency of selection by respondents. A few demographic items regarding age and gender also were included in the survey. Frequency distributions on these demographic variables were calculated. In addition, frequency distributions were determined on a question asking respondents how they wanted to receive future survivorship program information. An open-ended question also asked respondents to comment about the survivorship program or their cancer treatment and diagnosis. A content analysis of these responses was completed to determine other major topics of interest to survivors.
A total of 237 individuals completed the questionnaire. Demographic information indicated that the group was approximately 60% women (n = 148) and 40% men (n = 89). Approximately 89% were 51 years of age or older. Table 1 shows a frequency distribution by age-group.
Based on the age distribution of respondents, it is apparent that a large portion of the group was aged 51 years and older, with almost one-half of the respondents 65 years of age and older.
Respondents were asked to rate their level of concern to a series of items on a Likert-type scale from 0 (no concern) to 5 (extreme concern) in 4 domains categorized as physical, psychosocial, social, and spiritual. Individual items from the 4 categories were analyzed, and the frequency of response for each item compared with the frequency of response to all other items on the total scale. Items within each domain or category also were analyzed to compare the frequency of the response to an item with responses to the other items within the same domain. Respondents could indicate more than one response under each category. Respondents also could choose not to check any items in a category. The data have been divided into the 4 domains contained in the instrument for ease of review.
For each of the 4 categories, the individual items were collapsed into 2 categories. Category 1 included all responses of 1, 2, or 3 (with 1 being 0 [no concern] on the Likert-type scale) and Category 2 included all responses of 4 (concerned) and 5 (extreme concern) on the Likert-type scale. Tables 2 through 5 show the frequency of 4 and 5 rankings for each item in the 4 categories.
Respondents were asked to indicate their preferred methods of receiving survivorship information from a list. Most (54%) preferred receiving written information. About 12% indicated they preferred educational classes. The next most frequently chosen preferences were meeting with a healthcare specialist (7%) and receiving an educational video (6%). Approximately 21% of the respondents did not indicate a preference.
Most respondents did not complete the openended question. A content analysis yielded only 7 additional responses:
Educational issues are well met by the oncology learning center
Need help on obtaining health insurance
Survivorship program on an annual basis is good
Would like e-mail updates on cures and treatments
A structured physical exercise program for survivors would be helpful
Would like risk assessment for family members relating to cancer
Would like survivor conference with attendees from outside the local area.
Psychosocial and physical issues for the group of respondents as a whole outweighed all other categories, with fear of recurrence and fatigue receiving the highest rates of response (35% each). Additional concerns of similar importance, ranging from 23% to 29%, include sleep disturbances, memory issues, pain, managing stress, spirituality, financial concerns, and relationships. Preference for receiving information in written form was by far the most frequent response. The open-ended question indicated the desire for structured educational opportunities in the form of the learning center, survivorship meetings on an annual basis, and a conference for a broader audience beyond just local participants. In addition, survivors were interested in ongoing information on cures, cancer treatments, and negotiating healthcare insurance. Respondents aged 51 to 64 years as well as those aged 65 years and older ranked items somewhat differently than those aged 50 years and younger. In the physical category, the elderly (≥65 years)were most concerned with fatigue and sleep disturbances, as were those aged 51 to 64 years. Those aged 50 years and younger appear most concerned with sleep disturbances, memory, and body image. As a whole, items in the physical category were chosen more frequently by both older age-groups, that is, respondents aged 51 years and older. For older (51-64 years) and elderly (≥65 years) cancer survivors, fatigue was their top concern, making strategies to help these survivors cope and deal with fatigue a priority for those who work with them.
Respondents aged 50 years and younger seemed very concerned with financial issues. Individuals aged between 51 and 64 as well as those aged 65 years and older, however, did not select the social issues as frequently as they chose the physical issues. Of note, those aged 50 years and younger indicated more or just as much concern with financial issues as with physical side effects. The lower response rate to social issues for the older and elderly respondents indicates they have greater needs in other categories included in the survey.
In addition, older and elderly respondents indicated minimal concern regarding genetic counseling. This difference in response rates between those aged 50 years and younger versus those aged 51 years and older on financial concerns and genetic counseling appears statistically significant. However, this association should be made with caution because of the small number of younger survivors taking part in this survey.
For the psychosocial issues, all age-groups indicated fear of recurrence as their main concern. The other significant concern, as indicated by the high response rate, was the impact of their cancer on family relationships. Response rates to spiritual issues indicated the importance of this subject for individuals in all age-groups.
Ranking the issues irrespective of category, we identified priority issues for survivors aged 51 years and older:
Fear of recurrence
Memory and concentration
Religious and spiritual.
Based on the findings of this survey, the needs of survivors aged between 51 and 64 years as well as those 65 years and older are not significantly different. However, the survey demonstrates that there are some differences in needs indicated by survivors aged 50 years and younger. Therefore, awareness of these differences can assist providers in focusing on the concerns of older and elderly cancer survivors. Follow-up programs for cancer survivors should, perhaps, focus on helping older and elderly cancer survivors deal with fatigue, sleep disturbances, and pain, as well as memory and concentration. Providers should be aware of the high level of concern regarding cancer recurrence and provide frequent followup and counseling for both the survivors and their family. Providers also need to be cognizant of the strong spiritual needs of survivors of all ages and realize how important spirituality is to cancer survivors, especially for those aged 65 years and older.
Analysis of the survivor survey provides insight into survivor needs and, because of the number of elderly survivors attending this event, we had an opportunity to examine their unique needs. The needs identified as a result of this survey provide some insight into the needs of older and elderly survivors. There seems to be a strong similarity in the needs of both of these agegroups. Although there is also some congruence with the need of survivors aged 50 years and younger, providers need to be aware of some significant differences when helping older and elderly survivors cope with the consequences of their cancer and treatment.
There is a need to assess the specific requirements of elderly cancer survivors using valid and reliable instrumentation. This information should be used to develop structured educational programs for survivors and their families on an ongoing basis. Efforts should focus on helping survivors deal with fatigue and fear of recurrence.
This study was spurred by access to a convenience sample of older and elderly cancer survivors. The instrumentation, methodology, and data analysis lack the precision a more controlled study design might yield.
Psychosocial and physical issues on a whole outweigh all other issues, with fear of recurrence and fatigue as the most pervasive issues for older (51-64 years) and elderly (≥65 years) survivors. Our finding on the fear of recurrence is consistent with findings from other needs assessments of cancer survivors. However, this survey provides further refinement to physical and psychosocial issues identified by older and elderly cancer survivors.
Mosher CE, Sloane R, Morey MC, et al. Associations between lifestyle factors and quality of life among older longterm breast, prostate, and colorectal cancer survivors. Cancer. 2009;115:4001-4009.
Fairly TL, Pollack LA, Moore AR, Smith JL. Addressing cancer survivorship through public health: an update from the Centers for Disease Control and Prevention. J Womens Health (Larchmt). 2009;18:1525-1531.
Economou D. Cancer survivorship programs: return on investment. Presented at: Association of Community Cancer Centers’ 27th National Oncology Economics Conference; October 2, 2010; St. Louis, MO.
Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Committee on Cancer Survivorship: Improving Care and Quality of Life, National Cancer Policy Board, Institute of Medicine and National Research Council of the National Academies. Washington, DC: National Academies Press; 2005.
A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. Centers for Disease Control and Prevention, Lance Armstrong Foundation. Atlanta, GA: Centers for Disease Control and Prevention; 2004.
Sachs-Ericsson N, Schatschneider C, Blazer DG. Perception of unmet basic needs as a predictor of physical functions among community-dwelling older adults. J Aging Health. 2006;18:852-868.
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Bowman KF, Rose JH, Deimling GT, et al. Primary care physicians’ involvement in the cancer care of older longterm survivors. J Aging Health. 2010;22:673-686.
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Needs of Older and Elderly Cancer Survivors: Implications for Navigation
By Jennifer R. Powers, MS, BSN, CCRC, OCN
Maine Medical Center Cancer Institute, Scarborough
With 11.7 million cancer survivors in the United States, the role of navigation in survivorship is growing. As our population ages, navigators will need to focus on the specific needs of the older and elderly patients they navigate through survivorship care.
Survivorship is an essential component of the cancer care continuum, in which navigation now plays a key role. The role of the navigator may differ from program to program and cancer site to cancer site. However, navigation continues to grow and become more integrated in every aspect of the cancer care continuum.
This study confirms that navigation objectives similar to survivorship program goals need to be modified based on the populations we serve, whether they are young, middle-aged, or elderly. It is essential for navigators to be able to identify and delineate the patient/family needs based on age and prioritize survivorship care accordingly. There are several different survivorship models and navigation models. Regardless, the primary goals of survivorship remain constant. The relationship that is formed between the navigator and the patient and family is critical to the overall outcomes in survivorship.
Communication is one of the key elements for a successful patient–navigator relationship throughout the cancer care continuum. Navigators will educate and assist survivors in understanding surveillance guidelines and schedules that are necessary to assess risks for late effects and secondary cancers. This is also true for understanding the importance of early detection for cancer recurrences. In addition, the navigator will serve as the survivors’ and their families’ resource and advocate for connecting them to other health professionals who play a big role in survivorship. Examples include mental health, allied health, and community outreach professionals.
As Stanton and colleagues found, elderly survivors will have concerns regarding physical quality-of-life issues, fear of recurrence, and financial concerns, as well as others. The navigator will serve as the conduit for these survivors and their families to gain access to the other professionals to have their issues and concerns addressed. In doing so, navigators improve the ability to assist survivors and their families achieve overall satisfaction and positive outcomes throughout survivorship.
Patient navigation and care coordination have been a focus in healthcare for several years because of the fragmentation that commonly occurs among access, diagnosis, and treatment. This strong national movement [ Read More ]