Online Exclusive Article
© 2014 by the Oncology Nursing Society. Unauthorized reproduction is prohibited. For permission to post online, reprint, adapt, or reuse, email [email protected].
Oncology Rehabilitation Outcomes Over Time: A Mixed-Methods Approach Elizabeth J. Predeger, PhD, RN, Maureen O’Malley, PhD, RN, Thomas Hendrix, PhD, RN, and Nadine M. Parker, PhD, RN
A
ccording to the Centers for Disease Control and Prevention ([CDC], 2012a), the incidence of breast cancer from 1999–2008 decreased by 1.2% and the mortality rate fell by 2%. During the same timeframe, colon cancer incidence and mortality among men was unchanged but, among women, incidence fell by 2.4% and mortality fell by 2.9% (CDC, 2012b). Similarly, the incidence of prostate cancer reduced by 1.6% and mortality fell by 3.6% (CDC, 2012c). Cancer survivors are living longer with a disease that has become, for an increasing number of Americans, a chronic condition. Therefore, longer lifespans lead cancer survivors to strive for the highest possible quality of life through improved physical and emotional functioning. In response, rehabilitation programs have emerged that strive to promote optimal physical, sensory, intellectual, psychological, and functional levels of health (World Health Organization, 2013). Specifically, cancer rehabilitation provides specialists to help those living with cancer to be as independent as possible (American Cancer Society, 2013). Historically, oncology rehabilitation is a relatively new field of study; however, a significant body of quantitative research exists regarding the short-term benefits. When measured at program completion, individualized cancer rehabilitation programs have demonstrated improvements in patients’ physical functioning (Jones & Alfano, 2013; McEwen, Elmi, Waldman, & Bishev, 2012; Spence, Heesch, & Brown, 2010). Meta-analyses have confirmed that a change in physical activity had either a large-to-moderate positive effect (Formica et al., 2011) or made a clinically important difference (Fong et al., 2012) on physical functioning measures. Similar meta-analyses have shown that oncology rehabilitation results in positive effects on health-related quality of life, psychological outcomes, and symptoms (Conn, Hafdahl, Porock, McDaniel, & Nielsen, 2006; Farin & Nagel, 2013; Fong et al., 2012). About two-thirds of the of 82 independent clinical studE56
Purpose/Objectives: To evaluate an oncology rehabilitation program over time. Design: A cross-sectional, retrospective program evaluation using a mixed-methods approach. Setting: An outpatient oncology rehabilitation program housed in an urban, hospital-based comprehensive cancer center in Alaska. Sample: 102 cancer survivors who had completed a 10-week oncology rehabilitation program (mean time since completion was 2.5 years). Methods: Participants completed a mailed, 28-item retrospective survey to collect perceived activity level recalled at various points in time as well as program perceptions. Open-ended questions elicited narrative comments about motivators and barriers. The Medical Outcomes Study (MOS) SF-36® was completed before and after the program. Main Research Variables: Health-related quality of life, perceived health status, activity level, motivators, barriers, and program perceptions. Findings: A small increase in level of activity from precancer to the current time (postrehabilitation) (z = –3.1, p < 0.01) was reported. Most and least helpful motivators emerged from the narrative data, resulting in the shared interpretation of “I have my life back.” Conclusions: Program motivators were effective in helping cancer survivors maintain some increased activity and retain positive perceptions well after the completion of the program. Implications for Nursing: Survivors who complete a rehabilitation program retain a sense of restoration and caring, and some engage in physical activity over time. Adapting the program based on insights into the survivor perspective may assist oncology rehabilitation clinicians to promote optimum physical activity and sustain healthful change. Key Words: oncology; rehabilitation; evaluation; activity; long-term ONF, 41(2), E56–E63. doi:10.1188/14.ONF.E56-E63
ies systematically reviewed by Jones and Alfano (2013) found that exercise therapy is well tolerated and safe for cancer survivors. Vol. 41, No. 2, March 2014 • Oncology Nursing Forum
Although oncology rehabilitation has shown many benefits for those living with cancer, few studies (May et al., 2009; Midtgaard et al., 2009; Schultz et al., 2011) have evaluated oncology rehabilitation program outcomes over time. In one quantitative study, May et al. (2009) compared the effects of two forms of a selfmanagement rehabilitation program: physical training alone (n = 71) versus physical training and cognitive behavioral therapy (n = 76). Results were described before and after the program as well as three and nine months after program completion. For both groups, all improvements in the physical activity measures and quality-of-life domains were clinically relevant and sustained from immediately postintervention until nine months postintervention. Researchers theorized that the addition of the cognitive behavioral therapy would assist in sustaining the activity improvements in the long term, but that was not the case. A qualitative studies by Midtgaard et al. (2012) surveyed 23 survivors after a one-year rehabilitation program. The overarching theme of the findings was a “demonstration and manifestation of self-determination and illness resistance” (p. 1,999). Physical activity was the foundation for feeling and staying healthy. In addition, the activity helped participants to live to their full potential, suggesting that cancer survivor motivation for continuing a healthy and active regimen may be increased after participation in a meaningful rehabilitation experience. Oncology rehabilitation is an emotional and perhaps life-changing experience for many. Considering the quantitative and qualitative findings, it is important not only to determine which interventions are effective, but also to understand how they are perceived and what they mean to program participants. Therefore, the purpose of this mixed-methods study was to evaluate an oncology rehabilitation program over time and describe associated variables: perceived activity level, perceived health, and health-related quality of life. Specifically, this program evaluation project sought to answer several questions. • Were there significant differences in perceived activity level in the short-term (from preprogram to postprogram) and in the long-term (from precancer to the present)? • Were there significant relationships between perceived activity level, perceived health, and healthrelated quality of life in the short-term (preprogram to postprogram)? • What were the participants’ perceptions of their oncology rehabilitation experience?
Methods This study was based on program evaluation methodology that incorporated quantitative and qualitaOncology Nursing Forum • Vol. 41, No. 2, March 2014
tive approaches. A survey was developed and mailed to all survivors who had completed a rehabilitation program (N = 215) to collect retrospective information on perceived activity level in the short- and long-term and perceived health status. Short-term changes (preprogram to postprogram) as well as long-term changes (precancer to the time of the survey) were collected. The mailed survey also included several open-ended questions to encourage participants to share their views on health motivators or barriers and suggestions for program improvement. In addition, to analyze short-term outcomes, all participants were asked to complete the 36-item Medical Outcomes Study (MOS) SF-36® (RAND Health, 2009) of health-related quality of life before and after the oncology rehabilitation program. The quantitative findings and qualitative interpretive descriptions were analyzed jointly to provide recommendations for program improvement.
Participants and Setting The study was conducted in Anchorage at the Cancer Center, part of the Providence Alaska Medical Center, the largest health system in the state. To be eligible for the program, individuals had to have a cancer diagnosis and a referral from their healthcare provider; no specifications were made regarding cancer stage or length of time with cancer. The oncology rehabilitation program is multidisciplinary and includes nursing, physical therapy, and dietetics, as well as psychosocial support. Participants signed an informed consent form and received a health assessment with a personalized interdisciplinary plan to promote their health. Supportive counseling was available as needed. Participants attended two two-hour sessions per week for 10 weeks at the cancer center in an area with a wide variety of exercise equipment and an open space for group classes generally led by an oncology
Table 1. Participant Demographics (N = 96) Characteristic
n
Female Caucasian Married Retired Employed Four-year college degree or higher Cancer type (N = 99) • Breast • Ovarian or uterine • Lung • Prostate • Colorectal • Lymphoma • Multiple myeloma • Others
73 83 67 42 36 54 58 13 5 5 4 4 4 6
E57
nurse or physical therapist. The program included exercises to promote strength, relaxation, overall health, and mind-body healing. In the spring of 2012, a packet that included an introductory letter from the oncology rehabilitation staff, an informed consent statement, and the evaluation survey was mailed to those who completed all 10 weeks of the program. Approval was secured from the University of Alaska Anchorage Institutional Review Board.
Procedures and Instruments
Stage
At the beginning and end of the rehabilitation program, clinicians asked participants to complete a paper copy of the SF-36, which focuses on physical and mental components of health. The eight subscales of the SF-36 are physical functioning, role functioning/ physical, role functioning/emotional, energy/fatigue, emotional well-being, social functioning, pain, and general health. Higher scores indicate higher levels of functioning. The subscale and summary scores have shown strong internal consistency with a Cronbach alpha greater than 0.7 (Ware, 2000). In addition, Ware (2000) reported satisfactory content, concurrent, criterion, construct, and predictive validity. Retrospective program evaluation information was collected using a researcher-developed survey. The survey included 28 items that required about 15 minutes to complete. Of the 28 items, 13 were closed-ended items for demographics and perceived state of health and three were open-ended items. In addition, 12 graphic rating scale items were included, with four items on level of activity and eight items derived from the findings of Huberty et al. (2009) on barriers and motivators to exercise adherence in cancer survivors. The survey was reviewed by oncology rehabilitation clinicians as
well as a survivor who had completed the program and was pretested with several survivors attending oncology rehabilitation to establish face and content validity. Feedback was obtained and the survey was revised. Using the graphic rating scale, participants rated their perceptions of the program and their activity level by placing a mark on a 100 mm line resulting in a score of 0–100 for each item. Participants indicated their level of activity by recalling various points in time (precancer, preprogram, post-program, and current time) and used a visual scale with 0 indicating no exercise at all, 50 indicating average (exercising 30 minutes 2–3 times per week), and 100 indicating very active (exercising 60 minutes 4–5 times every week). Additional closed-ended items indicated stage of cancer and perceived state of health at the time of the mailed survey. A checklist asked participants to indicate the most helpful motivators in the program. Finally, several open-ended questions were used for elaboration about the program’s most and least helpful motivators. Respondents were provided adequate space to answer each of the questions, as well as a blank additional page as needed. Thoughts and recommendations on program improvement also were elicited.
Data Analysis
Quantitative data were entered into SPSS®, version 18.0, for statistical analysis. Normality of distributions was tested using the Shapiro-Wilk Test, and the majority of the distributions were significantly different from a normal distribution, therefore nonparametric statistical tests were performed. Differences in activity level over time were analyzed using the Wilcoxon Signed Rank Test. Relationships between changes in activity over time, perceived health, and health-related quality of life were tested using Spearman’s rho. Written responses were transcribed verbatim by an experienced transcripCurrent tionist, providing the narrative data for qualitative analysis. Using an interpretive descriptive approach Postprogram (Thorne, Kirkham, & MacDonald-Eames, 1997), participant words and supporting statements were crafted into a meaningful narrative of their experiPreprogram ences in oncology rehabilitation. Rigor, representativeness, and trustworthiness of the findings (Denzin Precancer & Lincoln, 2013) were enhanced through ongoing dialogue and consensual validation with the mul0 10 20 30 40 50 60 70 tidisciplinary research team. Repeated immersion Self-Reported Physical Activity Level (0–100) in the data and continued discussion among team Stage 1 Stage 3 members led to the interpretative description of the Stage 2 Stage 4 oncology rehabilitation experience.
Note. Includes respondents who completed the items shown on the follow-up survey.
Quantitative Findings
Figure 1. Cancer Stage Groups and Mean Activity Level
The follow-up retrospective survey was mailed to 215 survivors who completed the program, and
E58
Vol. 41, No. 2, March 2014 • Oncology Nursing Forum
Table 2. Significant Correlations Between Change in Activity and SF-36 Subscale Scores (N = 79) Change in Activity Level Short-term preprogram bodily pain Short-term preprogram physical functioning Short-term preprogram role physical Short-term preprogram social functioning Long-term preprogram role physical Long-term preprogram social functioning
Correlation Coefficienta –0.23 –0.26 –0.25 –0.23 –0.25 –0.27
Significant correlation was p < 0.05. Correlation was determined using Spearman’s rho. Note. Includes respondents who completed all the measures shown. Short-term change in activity is the difference between preprogram and postprogram measures. Long-term change in activity is the difference between precancer and current measures. a
102 surveys were returned yielding a 47% response rate. Table 1 shows the demographic characteristics of the respondents. They were predominantly female, Caucasian, and married, with an average age of 62.9 years (SD = 8.91). The majority of the respondents were diagnosed with breast cancer (n = 58, 59%) and completed the program within a mean of 2.5 years (SD = 19.9, range = 0.08–7.8 years). Employment status was evenly distributed and respondents were highly educated, with a majority of the respondents possessing a four-year college degree or higher. The cancer stage of respondents was variable, and a large majority (n = 79, 82%) viewed their health as either good or excellent at the time of the survey. The SF-36 survey was provided to all participants before and after the program, but the surveys were not completed consistently; therefore, the SF-36 data include only those respondents who completed the SF-36 before and after the program (n = 79). Respondents of the mailed survey were asked to quantify their activity level at four points in time: precancer, preprogram, immediately postprogram, and long-term postprogram (see Figure 1). As expected, a significant increase was noted in level of activity from immediately preprogram (Mrank = 2) to immediately postprogram (Mrank = 49) (z = –8.4, p < 0.01, r = 0.59). A significant increase also was noted in level of activity from precancer (Mrank = 42.83) to the current time (long-term postprogram) (Mrank = 50.02) (z = –3.1, p < 0.01, r = 0.22), although the effect was notably reduced when comparing the effect immediately after the program (r = 0.59) to the long-term change in activity (r = 0.22). Although small, some sustained positive change in activity over time was seen. The SF-36, completed immediately before and after rehabilitation, provided data for correlational analyses of short-term changes and several subscale scores correlated significantly with either short- or long-term Oncology Nursing Forum • Vol. 41, No. 2, March 2014
change in level of activity (see Table 2). Respondents also were asked to indicate how they perceived their own state of health and many of the subscale scores correlated to perceived state of health (see Table 3).
Qualitative Findings Questions addressing the most and least helpful components of the oncology rehabilitation experience guided the narrative portion of this evaluation (see Table 4). Most helpful motivators related to the importance of a supportive, nurturing environment, inclusive of staff and program participants. The theme “Group Support: I’m Not Alone” captured the importance of a supportive environment. Camaraderie in this group setting was emphasized in the voice of one participant. “That the gym is for oncology patients only facilitates a very supportive, empathetic, and inspiring atmosphere among fellow cancer survivors.” Personalized program components and a caring, knowledgeable staff encapsulated the theme “Staff Caring: They Understand.” Several respondents described staff as family and “doing the journey together.” Finally, the environment, physically and metaphorically, represented a safe nest. Respondents described a joyful staff in a clean state-of-the-art exercise facility that provided encouragement and motivated them through their journey. For least-helpful motivators, participants focused on their preference for or noted their dislike of relaxation techniques. The time involved and the limited hours of operation of the facility added to the list of barriers. Relaxation exercises, time involved in attendance, and limited hours of operation were the greatest challenge for sustained participation. Specifically, the term relaxation exercises encompassed techniques such as guided
Table 3. Correlations Between Current Perceived Health and SF-36 Subscale Scores (N = 74) Subscale Preprogram physical functioning Preprogram role physical Preprogram general health Preprogram vitality Preprogram social functioning Post-program physical functioning Postprogram role physical Postprogram general health Postprogram vitality Postprogram social functioning Postprogram role emotional
Correlation Coefficient –0.24* –0.41** –0.4** –0.35** –0.3** –0.25* –0.31** –0.34** –0.28* –0.31** –0.28*
* Correlation is significant at the 0.05 level using Spearman’s rho. ** Correlation is significant at the 0.01 level using Spearman’s rho. Note. Includes respondents who completed all measures shown.
E59
Table 4. Most and Least Helpful Components of the Program Theme
Supporting Statements
Most helpful motivators Group support: “I’m not alone”
“I never realized how supportive it would be to see and meet others dealing with cancer.” “My spouse refused to be involved. Being with a group was awesome.”
Staff caring; “They understand”
“Personal caring of this staff felt like a family; doing the journey together.” “Personal attention from both the nurse and the physical therapist was huge. They remembered me week after week and my situation . . . always available for questions.” “If something was difficult, they would help find a way to overcome it.”
Environment: “A safe nest”
“I felt safe to exercise within my limits because I was guided as to how to progress without harming myself.” “Got me moving again and out of a funk.” “Gave me the motivation to continue.”
Least helpful motivators Relaxation techniques
“There were very few relaxation sessions I was able to actually stay awake for.” “I found I didn’t like the relaxation exercises because I was anxious to get home to my child.” “Aimed more at some in different circumstances . . . New Age types.”
Time involved
“I had to take too much time off my work in the middle of the day to attend.” “In working full-time, it was difficult to make time for visits to oncology rehab and then return to work.”
Limited hours of operation
“The hours of the open gym were a little challenging.” “It was very hard to work out a time frame after chemotherapy was completed to attend rehab at the same time due to lack of flexibility in rehab.”
meditation, positive affirmations through music, warm blankets, stretching, and deep breathing. A number of respondents felt these techniques were aimed at “New Age types”; a group in which they did not see themselves. Completion of the program was difficult for participants working and managing family responsibilities. Participants indicated that the program required a E60
significant time investment, which was a blessing to some and a challenge for others. The time factor is, perhaps, why some felt that although they enjoyed and benefited from participation in the exercise, the lengthy and time-consuming relaxation period was the least beneficial. They perceived the benefit of exercise and strength-building, but would like to do so without spending excessive time in the gym. Staff caring, compassion, and competence were key factors that kept participants returning. Coupled with empathetic group support from fellow cancer survivors, respondents were subtly encouraged to continue. Sustained participation was boosted by a reported reduction in physical and emotional symptoms associated with cancer treatment. Suggestions for improvement centered on improved access, expansion of hours, less focus on relaxation techniques, a clear focus on core strength exercises, more nutrition information, and opportunities for sustained follow-up and continued group support activities. A unique approach, voiced by study participants, was to actively involve or invite cancer-care providers to attend, thereby experiencing the program first hand. Participants felt this would promote early referral and increased access to an extremely valuable program. Respondents suggested that rehabilitation staff provide instruction on at-home activities to maintain physical functioning with follow-up reassessments.
Discussion After a one-time retrospective evaluation, the oncology rehabilitation program produced modest improvement in participant level of activity that exceeded the precancer levels for most participants. The change in perceived activity level was sustained regardless of cancer stage and was consistent with prior research (May et al., 2009). This was supported in the narrative comments: “The program gave me the incentive to continue exercising after graduation,” and “. . . rebuilt my self-confidence that I could once again get active.” Narrative responses also described program motivators that contributed to this success, including group support, caring staff, and access to a nurturing safe place to focus on health. Respondents demonstrated that they were in touch with their own physical well-being, as their perceived health status was positively correlated to most of the physical and social functioning measures. A participant stated, “I experienced less fatigue than other patients who did not enroll in the program. I know I would have had a much more difficult time regaining strength if not for the program.” Quantitative and qualitative findings indicated that the more respondents perceived they could perform Vol. 41, No. 2, March 2014 • Oncology Nursing Forum
Program Characteristics
their physical and social activities of daily life, Exercise training the more successful they were in sustaining those activities. Relaxation exercises Narrative findings in this study are supported by the Midtgaard et al. (2012) study of post-treatment cancer survivors. For Structured classes example, when Midtgaard et al. (2012) discussed physical activity maintenance Preassessment behaviors, participants described feelings of confidence, control, and the challenge Hours of operation itself as reasons to sustain physical activity. In the current study, participants deGeneral education scribed program motivators as supportive Adverse effects (a feeling of connection to others, a carmanagement ing and safe atmosphere, and return of Chemotherapy a meaningful life). Although differences management exist in the findings, insights gained from Postprocedure the current program evaluation can be education used to guide clinicians in nurturing their 0 20 40 60 80 100 oncology rehabilitation clients toward Percentage of Participants additional sustainability. Inherent program motivators can create self-awareness Note. Includes respondents who completed the items shown on the follow-up and a heightened perception of health, survey. whereas continued personal and group Figure 2. Frequency Distributions of Most Helpful Program connections found in a supportive group Characteristics environment can promote sustained quality of life or “seeking a new norm” (Sandsund, Pattison, Doyle, & Shaw, 2013, p. 240). be based on a systematic needs assessment followed by Many program activities have been helpful to varytargeted, individualized interventions. ing degrees (see Figure 2). Clearly the support of In terms of sustainability over time, participants physical exercise, the systematic training, and strucwanted a periodic reassessment of their progress tured exercise classes were reported to be very helpwith a subsequent refinement of a personalized plan. ful (“I felt safe to exercise within my limits because Reassessment could be followed by a more structured I was guided as to how to progress without harming in-home plan. They also requested increased access myself.”), whereas the more clinical aspects of the through variable hours of operation. Finally, a clear program (management of symptoms, procedures, and structured method of follow-up after program and medications) were not valued as much. Some conclusion would have benefited all participants, participants expressed a challenge related to the limconsistent with the findings of Emery, Yang, Frierson, ited hours of operation and the time involved, parPeterson, and Suh (2009), who studied a five-year ticularly of the relaxation exercises (“I found I didn’t trajectory of physical activity maintenance in women like the relaxation exercises because I was anxious with breast cancer. They found an increase in activity to get home.”). Conflicting findings were noted on during the 18 months after diagnosis, followed by a the relaxation exercises as they also were found to be decrease in activity for the remaining 42 months of the second-strongest motivator by many respondents the study, concluding that a process exists in which a (n = 65, 64%). Although appreciated by many, guided behavior change becomes a habit. Rothman, Baldwin, relaxation exercises challenged those program particiand Hertel (2011) described this transition to habit as pants maintaining a busy schedule. the culminating stage in a behavior change. For cancer The program was highly valued by all participants: survivors, the goal is for physical activity to become a “Personal caring of this staff felt like a family; doing the habit and, thereby, develop into a new and preferred journey together.” Clinical managers should be aware lifestyle. that program hours and time-consuming exercises can Many respondents felt they should have been represent challenges for some. A population-based study ferred to the program earlier, consistent with Farin by Holm et al. (2012) found a wide range of reported and Nagel’s (2013) recommendation for physicians unmet needs with substantial variation. Holm et al. to actively promote rehabilitation while the patient (2012) concluded that rehabilitative cancer care should Oncology Nursing Forum • Vol. 41, No. 2, March 2014
E61
Knowledge Translation Cancer survivors can maintain changes in their level of activity and retain positive perceptions of oncology rehabilitation well after completion of the program. Motivators to successful completion and sustainability over time include improved program flexibility, group support, and continued follow-up. The interdisciplinary team is perceived as a cohesive and caring clinical unit focused on the holistic needs of cancer survivors.
is still in the acute phase of care. Respondents also voiced beliefs that, if their oncology providers had personally experienced the program, even in part, they would have a better understanding of the benefits of the program. Similarly, Peeters et al. (2009) found that, although both oncologists and clients valued structured exercise during cancer treatment, the oncologists noted insufficient time for discussion of exercise with their patients. Respondents also perceived inadequate provider knowledge of oncology rehabilitation services. Sandsund et al. (2012) suggested disparities in access were dependent on the treatment chosen. Similarly, Nwosu, Bayly, Gaunt, and Mayland (2012) described a lack of provider knowledge of services or referral mechanisms, along with waiting lists as key factors among providers that prevented patients with cancer from being offered rehabilitation; a finding that is striking in light of the importance that respondents in the current study placed on early referral in optimizing their quality of life. The time after a survivor’s diagnosis of cancer can be difficult and anxious. This group of oncology rehabilitation participants left the program with a feeling that they were given their life back. As noted by participant voices in this study, improved physical and emotional functioning can be achieved through early and sustained rehabilitation efforts. The importance of exercise training with competent and caring professionals in a supportive group setting, as oncology rehabilitation, can create an atmosphere of health in their recovery. Clearly, long-term studies with large sample sizes are needed to understand changes in perceived quality of life over time. Creative oncology programing and alternate delivery methods (i.e., online, use of smartphone applications, or blogs) that can promote connection and sustainability over time should be examined in future studies. Looking ahead, newer forms of program delivery that can be portable, cost effective, and maintain a E62
social connection may promote physical and emotional functioning in the lives of people living with cancer.
Limitations The findings should be viewed with caution because of several limitations. The data are cross-sectional and retrospective. Participant reports of precancer, preprogram, immediate postprogram, and long-term postprogram effects are self-reported and may reflect recall bias. The amount of time since the respondents completed rehabilitation is highly variable, and effects may have been stronger if a more consistent timeframe was used for long-term follow-up. The SF-36 responses represent less than 50% of the overall sample. The interpretive description emerged from data provided from responses to open-ended survey questions only, rather than multiple data sources. Only English-speaking literate individuals who had completed the program were included in the sample, and there may have been characteristics of those who did not complete the program that were not captured. Because several recommendations were focused on scheduling, full-time working cancer survivors were likely under-represented in this sample.
Conclusions and Implications This study has yielded useful information on longterm program outcomes for patients who participate in oncology rehabilitation programs. Cancer survivors can maintain changes in their level of activity and retain positive perceptions of oncology rehabilitation well after the completion of the program. The group setting provided an external motivator and added to the camaraderie and the ultimate completion of the program. Participant recommendations were numerous and varied, which suggest a multitude of individual needs will continue to challenge those who offer oncology rehabilitation services. Program motivators identified in this study, coupled with program flexibility, access for all in need, and a plan for sustained contact will go far in meeting the current and future needs of program participants. Insights gained from this study can inform decision making and program planning because the findings reflect what cancer survivors most care about. Elizabeth J. Predeger, PhD, RN, is a professor, Maureen O’Malley, PhD, RN, is an associate director, Thomas Hendrix, PhD, RN, is an associate professor, and Nadine M. Parker, PhD, RN, is an assistant professor, all in the School of Nursing at the University of Alaska in Anchorage. Support for this research was provided through a grant from Theta Omicron, Anchorage, Alaska, a chapter of Sigma Theta Tau International. Predeger can be reached at [email protected], with copy to editor at [email protected]. (Submitted January 2013. Accepted for publication August 19, 2013.) Vol. 41, No. 2, March 2014 • Oncology Nursing Forum
References American Cancer Society. (2013). Listen with your heart. Retrieved from http://www.cancer.org/acs/groups/cid/documents/ webcontent/002873-pdf.pdf Centers for Disease Control and Prevention. (2012a). Breast cancer trends. Retrieved from http://www.cdc.gov/cancer/breast/ statistics/trends.htm Centers for Disease Control and Prevention. (2012b). Colorectal cancer trends. Retrieved from http://www.cdc.gov/cancer/ colorectal/statistics/trends.htm Centers for Disease Control and Prevention. (2012c). Prostate cancer trends. Retrieved from http://www.cdc.gov/cancer/prostate/ statistics/trends.htm Conn, V.S., Hafdahl, A.R., Porock, D.C., McDaniel, R., & Nielsen, P.J. (2006). A meta-analysis of exercise interventions among people treated for cancer. Supportive Care in Cancer, 14, 699–712. doi:10.1007/s00520-005-0905-5 Denzin, N.K., & Lincoln, Y.S. (2013). Collecting and interpreting qualitative materials (4th ed.). Los Angeles, CA: Sage. Emery, C.F., Yang, H.C., Frierson, G.M., Peterson, L.J., & Suh, S. (2009). Determinants of physical activity among women treated for breast cancer in a five-year longitudinal follow-up investigation. Psycho-Oncology, 18, 377–386. doi:10.1002/pon.1519 Farin, E., & Nagel, M. (2013). The patient–physician relationship in patients with breast cancer: Influence on changes in quality of life after rehabilitation. Quality of Life Research, 22, 283–294. doi:10.1007/s11136-012-0151-5 Fong, D.Y., Ho, J.W., Hui, B.P., Lee, A.M., Macfarlane, D.J., Leung, S.S., . . . Cheng, K.K. (2012). Physical activity for cancer survivors: Meta-analysis of randomised controlled trials. BMJ, 344, e70. doi:10.1136/bmj.e70 Formica, V., Del Monte, G., Giacchetti, I., Grenga, I., Giaquinto, S., Fini, M., & Roselli, M. (2011). Rehabilitation in neuro-oncology: A metaanalysis of published data and a mono-institutional experience. Integrative Cancer Therapies, 10, 119–126. doi:10.1177/15347354103 92575 Holm, L.V., Hansen, D.G., Johansen, C., Vedsted, P., Larsen, P.V., Kragstrup, J., & Søndergaard, J. (2012). Participation in cancer rehabilitation and unmet needs: A population-based cohort study. Supportive Care in Cancer, 20, 2913–2924. doi:10.1007/s00520-012-1420-0 Huberty, J.L., Vener, J., Waltman, N., Ott, C., Twiss, J., Gross, G., . . . Dwyer, A. (2009). Development of an instrument to measure adherence to strength training in postmenopausal breast cancer survivors. Oncology Nursing Forum, 36, 266–273. doi:10.1188/09 .ONF.E266-E273 Jones, L., & Alfano C. (2013). Exercise-oncology research: Past, present, and future. Acta Oncologica, 52, 195–215. doi:10.3109/028418 6X.2012.742564 May, A.M., Korstjens, I., van Weert, E., van den Borne, B., Hoekstra-
Oncology Nursing Forum • Vol. 41, No. 2, March 2014
Weebers, J.E., van der Schans, C.P., . . . Ros, W.J. (2009). Long-term effects on cancer survivors’ quality of life of physical training versus physical training combined with cognitive-behavioral therapy: Results from a randomized trial. Supportive Care in Cancer, 17, 653–663. doi:10.1007/s00520-008-0519-9 McEwen, S.E., Elmi, S., Waldman, M., & Bishev, M. (2012). Inpatient oncology rehabilitation in Toronto: A descriptive 18-month retrospective record review. Supportive Care in Cancer, 20, 1541–1547. doi:10.1007/s00520-011-1243-4 Midtgaard, J., Røssell, K., Christensen, J.F., Uth, J., Adamsen, L., & Rørth, M. (2012). Demonstration and manifestation of self-determination and illness resistance—A qualitative study of long-term maintenance of physical activity in post-treatment cancer survivors. Supportive Care in Cancer, 20, 1999–2008. doi:10.1007/s00520-011-1304-8 Nwosu, A.C., Bayly, J.L., Gaunt, K.E., & Mayland, C.R. (2012). Lung cancer and rehabilitation—What are the barriers? Results of a questionnaire survey and the development of regional lung cancer rehabilitation standards and guidelines. Supportive Care in Cancer, 20, 3247–3254. doi:10.1007/s00520-012-1472-1 Peeters, C., Stewart, A., Segal, R., Wouterloot, E., Scott, C.G., & Aubry, T. (2009). Evaluation of a cancer exercise program: Patient and physician beliefs. Psycho-Oncology, 18, 898–902. doi:10.1002/pon.1406 RAND Health. (2009). 36-item short form survey from the RAND Medical Outcomes Study. Retrieved from http://www.rand.org/ health/surveys_tools/mos/mos_core_36item.html Rothman, A.J., Baldwin, A.S., & Hertel, A.W. (2011). Self-regulation and behavior change: Disentangling behavioral initiation and behavioral maintenance. In K.D. Vohs & R.F. Baumeister (Eds.), Handbook of self-regulation: Research, theory, and applications (2nd ed., pp. 106–124). New York, NY: Guillford Press. Sandsund, C., Pattison, N., Doyle, N., & Shaw, C. (2013). Finding a new normal: A grounded theory study of rehabilitation after treatment for upper gastrointestinal or gynaecological cancers—The patient’s perspective. European Journal of Cancer Care, 22, 232–244. doi:10.1111/ecc.12016 Schultz, S.L., Dalton, S.O., Christensen, J., Carlsen, K., Ross, L., & Johansen, C. (2011). Factors correlated with fatigue in breast cancer survivors undergoing a rehabilitation course, Denmark, 2002–2005. Psycho-Oncology, 20, 352–360. doi:10.1002/pon.1739 Spence, R.R., Heesch, K.C., & Brown, W.J. (2010). Exercise and cancer rehabilitation: A systematic review. Cancer Treatment Reviews, 36, 185–194. doi:10.1016/j.ctrv.2009.11.003 Thorne, S., Kirkham, S.R., & MacDonald-Eames, J. (1997). Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing and Health, 20, 169–177. Ware, J.E., Jr. (2000). SF-36 health survey update. Spine, 25, 3130–3139. World Health Organization. (2013). Rehabilitation. Retrieved from http://www.who.int/topics/rehabilitation/en
E63
Copyright of Oncology Nursing Forum is the property of Oncology Nursing Society and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
© 2014 by the Oncology Nursing Society. Unauthorized reproduction is prohibited. For permission to post online, reprint, adapt, or reuse, email [email protected].
Oncology Rehabilitation Outcomes Over Time: A Mixed-Methods Approach Elizabeth J. Predeger, PhD, RN, Maureen O’Malley, PhD, RN, Thomas Hendrix, PhD, RN, and Nadine M. Parker, PhD, RN
A
ccording to the Centers for Disease Control and Prevention ([CDC], 2012a), the incidence of breast cancer from 1999–2008 decreased by 1.2% and the mortality rate fell by 2%. During the same timeframe, colon cancer incidence and mortality among men was unchanged but, among women, incidence fell by 2.4% and mortality fell by 2.9% (CDC, 2012b). Similarly, the incidence of prostate cancer reduced by 1.6% and mortality fell by 3.6% (CDC, 2012c). Cancer survivors are living longer with a disease that has become, for an increasing number of Americans, a chronic condition. Therefore, longer lifespans lead cancer survivors to strive for the highest possible quality of life through improved physical and emotional functioning. In response, rehabilitation programs have emerged that strive to promote optimal physical, sensory, intellectual, psychological, and functional levels of health (World Health Organization, 2013). Specifically, cancer rehabilitation provides specialists to help those living with cancer to be as independent as possible (American Cancer Society, 2013). Historically, oncology rehabilitation is a relatively new field of study; however, a significant body of quantitative research exists regarding the short-term benefits. When measured at program completion, individualized cancer rehabilitation programs have demonstrated improvements in patients’ physical functioning (Jones & Alfano, 2013; McEwen, Elmi, Waldman, & Bishev, 2012; Spence, Heesch, & Brown, 2010). Meta-analyses have confirmed that a change in physical activity had either a large-to-moderate positive effect (Formica et al., 2011) or made a clinically important difference (Fong et al., 2012) on physical functioning measures. Similar meta-analyses have shown that oncology rehabilitation results in positive effects on health-related quality of life, psychological outcomes, and symptoms (Conn, Hafdahl, Porock, McDaniel, & Nielsen, 2006; Farin & Nagel, 2013; Fong et al., 2012). About two-thirds of the of 82 independent clinical studE56
Purpose/Objectives: To evaluate an oncology rehabilitation program over time. Design: A cross-sectional, retrospective program evaluation using a mixed-methods approach. Setting: An outpatient oncology rehabilitation program housed in an urban, hospital-based comprehensive cancer center in Alaska. Sample: 102 cancer survivors who had completed a 10-week oncology rehabilitation program (mean time since completion was 2.5 years). Methods: Participants completed a mailed, 28-item retrospective survey to collect perceived activity level recalled at various points in time as well as program perceptions. Open-ended questions elicited narrative comments about motivators and barriers. The Medical Outcomes Study (MOS) SF-36® was completed before and after the program. Main Research Variables: Health-related quality of life, perceived health status, activity level, motivators, barriers, and program perceptions. Findings: A small increase in level of activity from precancer to the current time (postrehabilitation) (z = –3.1, p < 0.01) was reported. Most and least helpful motivators emerged from the narrative data, resulting in the shared interpretation of “I have my life back.” Conclusions: Program motivators were effective in helping cancer survivors maintain some increased activity and retain positive perceptions well after the completion of the program. Implications for Nursing: Survivors who complete a rehabilitation program retain a sense of restoration and caring, and some engage in physical activity over time. Adapting the program based on insights into the survivor perspective may assist oncology rehabilitation clinicians to promote optimum physical activity and sustain healthful change. Key Words: oncology; rehabilitation; evaluation; activity; long-term ONF, 41(2), E56–E63. doi:10.1188/14.ONF.E56-E63
ies systematically reviewed by Jones and Alfano (2013) found that exercise therapy is well tolerated and safe for cancer survivors. Vol. 41, No. 2, March 2014 • Oncology Nursing Forum
Although oncology rehabilitation has shown many benefits for those living with cancer, few studies (May et al., 2009; Midtgaard et al., 2009; Schultz et al., 2011) have evaluated oncology rehabilitation program outcomes over time. In one quantitative study, May et al. (2009) compared the effects of two forms of a selfmanagement rehabilitation program: physical training alone (n = 71) versus physical training and cognitive behavioral therapy (n = 76). Results were described before and after the program as well as three and nine months after program completion. For both groups, all improvements in the physical activity measures and quality-of-life domains were clinically relevant and sustained from immediately postintervention until nine months postintervention. Researchers theorized that the addition of the cognitive behavioral therapy would assist in sustaining the activity improvements in the long term, but that was not the case. A qualitative studies by Midtgaard et al. (2012) surveyed 23 survivors after a one-year rehabilitation program. The overarching theme of the findings was a “demonstration and manifestation of self-determination and illness resistance” (p. 1,999). Physical activity was the foundation for feeling and staying healthy. In addition, the activity helped participants to live to their full potential, suggesting that cancer survivor motivation for continuing a healthy and active regimen may be increased after participation in a meaningful rehabilitation experience. Oncology rehabilitation is an emotional and perhaps life-changing experience for many. Considering the quantitative and qualitative findings, it is important not only to determine which interventions are effective, but also to understand how they are perceived and what they mean to program participants. Therefore, the purpose of this mixed-methods study was to evaluate an oncology rehabilitation program over time and describe associated variables: perceived activity level, perceived health, and health-related quality of life. Specifically, this program evaluation project sought to answer several questions. • Were there significant differences in perceived activity level in the short-term (from preprogram to postprogram) and in the long-term (from precancer to the present)? • Were there significant relationships between perceived activity level, perceived health, and healthrelated quality of life in the short-term (preprogram to postprogram)? • What were the participants’ perceptions of their oncology rehabilitation experience?
Methods This study was based on program evaluation methodology that incorporated quantitative and qualitaOncology Nursing Forum • Vol. 41, No. 2, March 2014
tive approaches. A survey was developed and mailed to all survivors who had completed a rehabilitation program (N = 215) to collect retrospective information on perceived activity level in the short- and long-term and perceived health status. Short-term changes (preprogram to postprogram) as well as long-term changes (precancer to the time of the survey) were collected. The mailed survey also included several open-ended questions to encourage participants to share their views on health motivators or barriers and suggestions for program improvement. In addition, to analyze short-term outcomes, all participants were asked to complete the 36-item Medical Outcomes Study (MOS) SF-36® (RAND Health, 2009) of health-related quality of life before and after the oncology rehabilitation program. The quantitative findings and qualitative interpretive descriptions were analyzed jointly to provide recommendations for program improvement.
Participants and Setting The study was conducted in Anchorage at the Cancer Center, part of the Providence Alaska Medical Center, the largest health system in the state. To be eligible for the program, individuals had to have a cancer diagnosis and a referral from their healthcare provider; no specifications were made regarding cancer stage or length of time with cancer. The oncology rehabilitation program is multidisciplinary and includes nursing, physical therapy, and dietetics, as well as psychosocial support. Participants signed an informed consent form and received a health assessment with a personalized interdisciplinary plan to promote their health. Supportive counseling was available as needed. Participants attended two two-hour sessions per week for 10 weeks at the cancer center in an area with a wide variety of exercise equipment and an open space for group classes generally led by an oncology
Table 1. Participant Demographics (N = 96) Characteristic
n
Female Caucasian Married Retired Employed Four-year college degree or higher Cancer type (N = 99) • Breast • Ovarian or uterine • Lung • Prostate • Colorectal • Lymphoma • Multiple myeloma • Others
73 83 67 42 36 54 58 13 5 5 4 4 4 6
E57
nurse or physical therapist. The program included exercises to promote strength, relaxation, overall health, and mind-body healing. In the spring of 2012, a packet that included an introductory letter from the oncology rehabilitation staff, an informed consent statement, and the evaluation survey was mailed to those who completed all 10 weeks of the program. Approval was secured from the University of Alaska Anchorage Institutional Review Board.
Procedures and Instruments
Stage
At the beginning and end of the rehabilitation program, clinicians asked participants to complete a paper copy of the SF-36, which focuses on physical and mental components of health. The eight subscales of the SF-36 are physical functioning, role functioning/ physical, role functioning/emotional, energy/fatigue, emotional well-being, social functioning, pain, and general health. Higher scores indicate higher levels of functioning. The subscale and summary scores have shown strong internal consistency with a Cronbach alpha greater than 0.7 (Ware, 2000). In addition, Ware (2000) reported satisfactory content, concurrent, criterion, construct, and predictive validity. Retrospective program evaluation information was collected using a researcher-developed survey. The survey included 28 items that required about 15 minutes to complete. Of the 28 items, 13 were closed-ended items for demographics and perceived state of health and three were open-ended items. In addition, 12 graphic rating scale items were included, with four items on level of activity and eight items derived from the findings of Huberty et al. (2009) on barriers and motivators to exercise adherence in cancer survivors. The survey was reviewed by oncology rehabilitation clinicians as
well as a survivor who had completed the program and was pretested with several survivors attending oncology rehabilitation to establish face and content validity. Feedback was obtained and the survey was revised. Using the graphic rating scale, participants rated their perceptions of the program and their activity level by placing a mark on a 100 mm line resulting in a score of 0–100 for each item. Participants indicated their level of activity by recalling various points in time (precancer, preprogram, post-program, and current time) and used a visual scale with 0 indicating no exercise at all, 50 indicating average (exercising 30 minutes 2–3 times per week), and 100 indicating very active (exercising 60 minutes 4–5 times every week). Additional closed-ended items indicated stage of cancer and perceived state of health at the time of the mailed survey. A checklist asked participants to indicate the most helpful motivators in the program. Finally, several open-ended questions were used for elaboration about the program’s most and least helpful motivators. Respondents were provided adequate space to answer each of the questions, as well as a blank additional page as needed. Thoughts and recommendations on program improvement also were elicited.
Data Analysis
Quantitative data were entered into SPSS®, version 18.0, for statistical analysis. Normality of distributions was tested using the Shapiro-Wilk Test, and the majority of the distributions were significantly different from a normal distribution, therefore nonparametric statistical tests were performed. Differences in activity level over time were analyzed using the Wilcoxon Signed Rank Test. Relationships between changes in activity over time, perceived health, and health-related quality of life were tested using Spearman’s rho. Written responses were transcribed verbatim by an experienced transcripCurrent tionist, providing the narrative data for qualitative analysis. Using an interpretive descriptive approach Postprogram (Thorne, Kirkham, & MacDonald-Eames, 1997), participant words and supporting statements were crafted into a meaningful narrative of their experiPreprogram ences in oncology rehabilitation. Rigor, representativeness, and trustworthiness of the findings (Denzin Precancer & Lincoln, 2013) were enhanced through ongoing dialogue and consensual validation with the mul0 10 20 30 40 50 60 70 tidisciplinary research team. Repeated immersion Self-Reported Physical Activity Level (0–100) in the data and continued discussion among team Stage 1 Stage 3 members led to the interpretative description of the Stage 2 Stage 4 oncology rehabilitation experience.
Note. Includes respondents who completed the items shown on the follow-up survey.
Quantitative Findings
Figure 1. Cancer Stage Groups and Mean Activity Level
The follow-up retrospective survey was mailed to 215 survivors who completed the program, and
E58
Vol. 41, No. 2, March 2014 • Oncology Nursing Forum
Table 2. Significant Correlations Between Change in Activity and SF-36 Subscale Scores (N = 79) Change in Activity Level Short-term preprogram bodily pain Short-term preprogram physical functioning Short-term preprogram role physical Short-term preprogram social functioning Long-term preprogram role physical Long-term preprogram social functioning
Correlation Coefficienta –0.23 –0.26 –0.25 –0.23 –0.25 –0.27
Significant correlation was p < 0.05. Correlation was determined using Spearman’s rho. Note. Includes respondents who completed all the measures shown. Short-term change in activity is the difference between preprogram and postprogram measures. Long-term change in activity is the difference between precancer and current measures. a
102 surveys were returned yielding a 47% response rate. Table 1 shows the demographic characteristics of the respondents. They were predominantly female, Caucasian, and married, with an average age of 62.9 years (SD = 8.91). The majority of the respondents were diagnosed with breast cancer (n = 58, 59%) and completed the program within a mean of 2.5 years (SD = 19.9, range = 0.08–7.8 years). Employment status was evenly distributed and respondents were highly educated, with a majority of the respondents possessing a four-year college degree or higher. The cancer stage of respondents was variable, and a large majority (n = 79, 82%) viewed their health as either good or excellent at the time of the survey. The SF-36 survey was provided to all participants before and after the program, but the surveys were not completed consistently; therefore, the SF-36 data include only those respondents who completed the SF-36 before and after the program (n = 79). Respondents of the mailed survey were asked to quantify their activity level at four points in time: precancer, preprogram, immediately postprogram, and long-term postprogram (see Figure 1). As expected, a significant increase was noted in level of activity from immediately preprogram (Mrank = 2) to immediately postprogram (Mrank = 49) (z = –8.4, p < 0.01, r = 0.59). A significant increase also was noted in level of activity from precancer (Mrank = 42.83) to the current time (long-term postprogram) (Mrank = 50.02) (z = –3.1, p < 0.01, r = 0.22), although the effect was notably reduced when comparing the effect immediately after the program (r = 0.59) to the long-term change in activity (r = 0.22). Although small, some sustained positive change in activity over time was seen. The SF-36, completed immediately before and after rehabilitation, provided data for correlational analyses of short-term changes and several subscale scores correlated significantly with either short- or long-term Oncology Nursing Forum • Vol. 41, No. 2, March 2014
change in level of activity (see Table 2). Respondents also were asked to indicate how they perceived their own state of health and many of the subscale scores correlated to perceived state of health (see Table 3).
Qualitative Findings Questions addressing the most and least helpful components of the oncology rehabilitation experience guided the narrative portion of this evaluation (see Table 4). Most helpful motivators related to the importance of a supportive, nurturing environment, inclusive of staff and program participants. The theme “Group Support: I’m Not Alone” captured the importance of a supportive environment. Camaraderie in this group setting was emphasized in the voice of one participant. “That the gym is for oncology patients only facilitates a very supportive, empathetic, and inspiring atmosphere among fellow cancer survivors.” Personalized program components and a caring, knowledgeable staff encapsulated the theme “Staff Caring: They Understand.” Several respondents described staff as family and “doing the journey together.” Finally, the environment, physically and metaphorically, represented a safe nest. Respondents described a joyful staff in a clean state-of-the-art exercise facility that provided encouragement and motivated them through their journey. For least-helpful motivators, participants focused on their preference for or noted their dislike of relaxation techniques. The time involved and the limited hours of operation of the facility added to the list of barriers. Relaxation exercises, time involved in attendance, and limited hours of operation were the greatest challenge for sustained participation. Specifically, the term relaxation exercises encompassed techniques such as guided
Table 3. Correlations Between Current Perceived Health and SF-36 Subscale Scores (N = 74) Subscale Preprogram physical functioning Preprogram role physical Preprogram general health Preprogram vitality Preprogram social functioning Post-program physical functioning Postprogram role physical Postprogram general health Postprogram vitality Postprogram social functioning Postprogram role emotional
Correlation Coefficient –0.24* –0.41** –0.4** –0.35** –0.3** –0.25* –0.31** –0.34** –0.28* –0.31** –0.28*
* Correlation is significant at the 0.05 level using Spearman’s rho. ** Correlation is significant at the 0.01 level using Spearman’s rho. Note. Includes respondents who completed all measures shown.
E59
Table 4. Most and Least Helpful Components of the Program Theme
Supporting Statements
Most helpful motivators Group support: “I’m not alone”
“I never realized how supportive it would be to see and meet others dealing with cancer.” “My spouse refused to be involved. Being with a group was awesome.”
Staff caring; “They understand”
“Personal caring of this staff felt like a family; doing the journey together.” “Personal attention from both the nurse and the physical therapist was huge. They remembered me week after week and my situation . . . always available for questions.” “If something was difficult, they would help find a way to overcome it.”
Environment: “A safe nest”
“I felt safe to exercise within my limits because I was guided as to how to progress without harming myself.” “Got me moving again and out of a funk.” “Gave me the motivation to continue.”
Least helpful motivators Relaxation techniques
“There were very few relaxation sessions I was able to actually stay awake for.” “I found I didn’t like the relaxation exercises because I was anxious to get home to my child.” “Aimed more at some in different circumstances . . . New Age types.”
Time involved
“I had to take too much time off my work in the middle of the day to attend.” “In working full-time, it was difficult to make time for visits to oncology rehab and then return to work.”
Limited hours of operation
“The hours of the open gym were a little challenging.” “It was very hard to work out a time frame after chemotherapy was completed to attend rehab at the same time due to lack of flexibility in rehab.”
meditation, positive affirmations through music, warm blankets, stretching, and deep breathing. A number of respondents felt these techniques were aimed at “New Age types”; a group in which they did not see themselves. Completion of the program was difficult for participants working and managing family responsibilities. Participants indicated that the program required a E60
significant time investment, which was a blessing to some and a challenge for others. The time factor is, perhaps, why some felt that although they enjoyed and benefited from participation in the exercise, the lengthy and time-consuming relaxation period was the least beneficial. They perceived the benefit of exercise and strength-building, but would like to do so without spending excessive time in the gym. Staff caring, compassion, and competence were key factors that kept participants returning. Coupled with empathetic group support from fellow cancer survivors, respondents were subtly encouraged to continue. Sustained participation was boosted by a reported reduction in physical and emotional symptoms associated with cancer treatment. Suggestions for improvement centered on improved access, expansion of hours, less focus on relaxation techniques, a clear focus on core strength exercises, more nutrition information, and opportunities for sustained follow-up and continued group support activities. A unique approach, voiced by study participants, was to actively involve or invite cancer-care providers to attend, thereby experiencing the program first hand. Participants felt this would promote early referral and increased access to an extremely valuable program. Respondents suggested that rehabilitation staff provide instruction on at-home activities to maintain physical functioning with follow-up reassessments.
Discussion After a one-time retrospective evaluation, the oncology rehabilitation program produced modest improvement in participant level of activity that exceeded the precancer levels for most participants. The change in perceived activity level was sustained regardless of cancer stage and was consistent with prior research (May et al., 2009). This was supported in the narrative comments: “The program gave me the incentive to continue exercising after graduation,” and “. . . rebuilt my self-confidence that I could once again get active.” Narrative responses also described program motivators that contributed to this success, including group support, caring staff, and access to a nurturing safe place to focus on health. Respondents demonstrated that they were in touch with their own physical well-being, as their perceived health status was positively correlated to most of the physical and social functioning measures. A participant stated, “I experienced less fatigue than other patients who did not enroll in the program. I know I would have had a much more difficult time regaining strength if not for the program.” Quantitative and qualitative findings indicated that the more respondents perceived they could perform Vol. 41, No. 2, March 2014 • Oncology Nursing Forum
Program Characteristics
their physical and social activities of daily life, Exercise training the more successful they were in sustaining those activities. Relaxation exercises Narrative findings in this study are supported by the Midtgaard et al. (2012) study of post-treatment cancer survivors. For Structured classes example, when Midtgaard et al. (2012) discussed physical activity maintenance Preassessment behaviors, participants described feelings of confidence, control, and the challenge Hours of operation itself as reasons to sustain physical activity. In the current study, participants deGeneral education scribed program motivators as supportive Adverse effects (a feeling of connection to others, a carmanagement ing and safe atmosphere, and return of Chemotherapy a meaningful life). Although differences management exist in the findings, insights gained from Postprocedure the current program evaluation can be education used to guide clinicians in nurturing their 0 20 40 60 80 100 oncology rehabilitation clients toward Percentage of Participants additional sustainability. Inherent program motivators can create self-awareness Note. Includes respondents who completed the items shown on the follow-up and a heightened perception of health, survey. whereas continued personal and group Figure 2. Frequency Distributions of Most Helpful Program connections found in a supportive group Characteristics environment can promote sustained quality of life or “seeking a new norm” (Sandsund, Pattison, Doyle, & Shaw, 2013, p. 240). be based on a systematic needs assessment followed by Many program activities have been helpful to varytargeted, individualized interventions. ing degrees (see Figure 2). Clearly the support of In terms of sustainability over time, participants physical exercise, the systematic training, and strucwanted a periodic reassessment of their progress tured exercise classes were reported to be very helpwith a subsequent refinement of a personalized plan. ful (“I felt safe to exercise within my limits because Reassessment could be followed by a more structured I was guided as to how to progress without harming in-home plan. They also requested increased access myself.”), whereas the more clinical aspects of the through variable hours of operation. Finally, a clear program (management of symptoms, procedures, and structured method of follow-up after program and medications) were not valued as much. Some conclusion would have benefited all participants, participants expressed a challenge related to the limconsistent with the findings of Emery, Yang, Frierson, ited hours of operation and the time involved, parPeterson, and Suh (2009), who studied a five-year ticularly of the relaxation exercises (“I found I didn’t trajectory of physical activity maintenance in women like the relaxation exercises because I was anxious with breast cancer. They found an increase in activity to get home.”). Conflicting findings were noted on during the 18 months after diagnosis, followed by a the relaxation exercises as they also were found to be decrease in activity for the remaining 42 months of the second-strongest motivator by many respondents the study, concluding that a process exists in which a (n = 65, 64%). Although appreciated by many, guided behavior change becomes a habit. Rothman, Baldwin, relaxation exercises challenged those program particiand Hertel (2011) described this transition to habit as pants maintaining a busy schedule. the culminating stage in a behavior change. For cancer The program was highly valued by all participants: survivors, the goal is for physical activity to become a “Personal caring of this staff felt like a family; doing the habit and, thereby, develop into a new and preferred journey together.” Clinical managers should be aware lifestyle. that program hours and time-consuming exercises can Many respondents felt they should have been represent challenges for some. A population-based study ferred to the program earlier, consistent with Farin by Holm et al. (2012) found a wide range of reported and Nagel’s (2013) recommendation for physicians unmet needs with substantial variation. Holm et al. to actively promote rehabilitation while the patient (2012) concluded that rehabilitative cancer care should Oncology Nursing Forum • Vol. 41, No. 2, March 2014
E61
Knowledge Translation Cancer survivors can maintain changes in their level of activity and retain positive perceptions of oncology rehabilitation well after completion of the program. Motivators to successful completion and sustainability over time include improved program flexibility, group support, and continued follow-up. The interdisciplinary team is perceived as a cohesive and caring clinical unit focused on the holistic needs of cancer survivors.
is still in the acute phase of care. Respondents also voiced beliefs that, if their oncology providers had personally experienced the program, even in part, they would have a better understanding of the benefits of the program. Similarly, Peeters et al. (2009) found that, although both oncologists and clients valued structured exercise during cancer treatment, the oncologists noted insufficient time for discussion of exercise with their patients. Respondents also perceived inadequate provider knowledge of oncology rehabilitation services. Sandsund et al. (2012) suggested disparities in access were dependent on the treatment chosen. Similarly, Nwosu, Bayly, Gaunt, and Mayland (2012) described a lack of provider knowledge of services or referral mechanisms, along with waiting lists as key factors among providers that prevented patients with cancer from being offered rehabilitation; a finding that is striking in light of the importance that respondents in the current study placed on early referral in optimizing their quality of life. The time after a survivor’s diagnosis of cancer can be difficult and anxious. This group of oncology rehabilitation participants left the program with a feeling that they were given their life back. As noted by participant voices in this study, improved physical and emotional functioning can be achieved through early and sustained rehabilitation efforts. The importance of exercise training with competent and caring professionals in a supportive group setting, as oncology rehabilitation, can create an atmosphere of health in their recovery. Clearly, long-term studies with large sample sizes are needed to understand changes in perceived quality of life over time. Creative oncology programing and alternate delivery methods (i.e., online, use of smartphone applications, or blogs) that can promote connection and sustainability over time should be examined in future studies. Looking ahead, newer forms of program delivery that can be portable, cost effective, and maintain a E62
social connection may promote physical and emotional functioning in the lives of people living with cancer.
Limitations The findings should be viewed with caution because of several limitations. The data are cross-sectional and retrospective. Participant reports of precancer, preprogram, immediate postprogram, and long-term postprogram effects are self-reported and may reflect recall bias. The amount of time since the respondents completed rehabilitation is highly variable, and effects may have been stronger if a more consistent timeframe was used for long-term follow-up. The SF-36 responses represent less than 50% of the overall sample. The interpretive description emerged from data provided from responses to open-ended survey questions only, rather than multiple data sources. Only English-speaking literate individuals who had completed the program were included in the sample, and there may have been characteristics of those who did not complete the program that were not captured. Because several recommendations were focused on scheduling, full-time working cancer survivors were likely under-represented in this sample.
Conclusions and Implications This study has yielded useful information on longterm program outcomes for patients who participate in oncology rehabilitation programs. Cancer survivors can maintain changes in their level of activity and retain positive perceptions of oncology rehabilitation well after the completion of the program. The group setting provided an external motivator and added to the camaraderie and the ultimate completion of the program. Participant recommendations were numerous and varied, which suggest a multitude of individual needs will continue to challenge those who offer oncology rehabilitation services. Program motivators identified in this study, coupled with program flexibility, access for all in need, and a plan for sustained contact will go far in meeting the current and future needs of program participants. Insights gained from this study can inform decision making and program planning because the findings reflect what cancer survivors most care about. Elizabeth J. Predeger, PhD, RN, is a professor, Maureen O’Malley, PhD, RN, is an associate director, Thomas Hendrix, PhD, RN, is an associate professor, and Nadine M. Parker, PhD, RN, is an assistant professor, all in the School of Nursing at the University of Alaska in Anchorage. Support for this research was provided through a grant from Theta Omicron, Anchorage, Alaska, a chapter of Sigma Theta Tau International. Predeger can be reached at [email protected], with copy to editor at [email protected]. (Submitted January 2013. Accepted for publication August 19, 2013.) Vol. 41, No. 2, March 2014 • Oncology Nursing Forum
References American Cancer Society. (2013). Listen with your heart. Retrieved from http://www.cancer.org/acs/groups/cid/documents/ webcontent/002873-pdf.pdf Centers for Disease Control and Prevention. (2012a). Breast cancer trends. Retrieved from http://www.cdc.gov/cancer/breast/ statistics/trends.htm Centers for Disease Control and Prevention. (2012b). Colorectal cancer trends. Retrieved from http://www.cdc.gov/cancer/ colorectal/statistics/trends.htm Centers for Disease Control and Prevention. (2012c). Prostate cancer trends. Retrieved from http://www.cdc.gov/cancer/prostate/ statistics/trends.htm Conn, V.S., Hafdahl, A.R., Porock, D.C., McDaniel, R., & Nielsen, P.J. (2006). A meta-analysis of exercise interventions among people treated for cancer. Supportive Care in Cancer, 14, 699–712. doi:10.1007/s00520-005-0905-5 Denzin, N.K., & Lincoln, Y.S. (2013). Collecting and interpreting qualitative materials (4th ed.). Los Angeles, CA: Sage. Emery, C.F., Yang, H.C., Frierson, G.M., Peterson, L.J., & Suh, S. (2009). Determinants of physical activity among women treated for breast cancer in a five-year longitudinal follow-up investigation. Psycho-Oncology, 18, 377–386. doi:10.1002/pon.1519 Farin, E., & Nagel, M. (2013). The patient–physician relationship in patients with breast cancer: Influence on changes in quality of life after rehabilitation. Quality of Life Research, 22, 283–294. doi:10.1007/s11136-012-0151-5 Fong, D.Y., Ho, J.W., Hui, B.P., Lee, A.M., Macfarlane, D.J., Leung, S.S., . . . Cheng, K.K. (2012). Physical activity for cancer survivors: Meta-analysis of randomised controlled trials. BMJ, 344, e70. doi:10.1136/bmj.e70 Formica, V., Del Monte, G., Giacchetti, I., Grenga, I., Giaquinto, S., Fini, M., & Roselli, M. (2011). Rehabilitation in neuro-oncology: A metaanalysis of published data and a mono-institutional experience. Integrative Cancer Therapies, 10, 119–126. doi:10.1177/15347354103 92575 Holm, L.V., Hansen, D.G., Johansen, C., Vedsted, P., Larsen, P.V., Kragstrup, J., & Søndergaard, J. (2012). Participation in cancer rehabilitation and unmet needs: A population-based cohort study. Supportive Care in Cancer, 20, 2913–2924. doi:10.1007/s00520-012-1420-0 Huberty, J.L., Vener, J., Waltman, N., Ott, C., Twiss, J., Gross, G., . . . Dwyer, A. (2009). Development of an instrument to measure adherence to strength training in postmenopausal breast cancer survivors. Oncology Nursing Forum, 36, 266–273. doi:10.1188/09 .ONF.E266-E273 Jones, L., & Alfano C. (2013). Exercise-oncology research: Past, present, and future. Acta Oncologica, 52, 195–215. doi:10.3109/028418 6X.2012.742564 May, A.M., Korstjens, I., van Weert, E., van den Borne, B., Hoekstra-
Oncology Nursing Forum • Vol. 41, No. 2, March 2014
Weebers, J.E., van der Schans, C.P., . . . Ros, W.J. (2009). Long-term effects on cancer survivors’ quality of life of physical training versus physical training combined with cognitive-behavioral therapy: Results from a randomized trial. Supportive Care in Cancer, 17, 653–663. doi:10.1007/s00520-008-0519-9 McEwen, S.E., Elmi, S., Waldman, M., & Bishev, M. (2012). Inpatient oncology rehabilitation in Toronto: A descriptive 18-month retrospective record review. Supportive Care in Cancer, 20, 1541–1547. doi:10.1007/s00520-011-1243-4 Midtgaard, J., Røssell, K., Christensen, J.F., Uth, J., Adamsen, L., & Rørth, M. (2012). Demonstration and manifestation of self-determination and illness resistance—A qualitative study of long-term maintenance of physical activity in post-treatment cancer survivors. Supportive Care in Cancer, 20, 1999–2008. doi:10.1007/s00520-011-1304-8 Nwosu, A.C., Bayly, J.L., Gaunt, K.E., & Mayland, C.R. (2012). Lung cancer and rehabilitation—What are the barriers? Results of a questionnaire survey and the development of regional lung cancer rehabilitation standards and guidelines. Supportive Care in Cancer, 20, 3247–3254. doi:10.1007/s00520-012-1472-1 Peeters, C., Stewart, A., Segal, R., Wouterloot, E., Scott, C.G., & Aubry, T. (2009). Evaluation of a cancer exercise program: Patient and physician beliefs. Psycho-Oncology, 18, 898–902. doi:10.1002/pon.1406 RAND Health. (2009). 36-item short form survey from the RAND Medical Outcomes Study. Retrieved from http://www.rand.org/ health/surveys_tools/mos/mos_core_36item.html Rothman, A.J., Baldwin, A.S., & Hertel, A.W. (2011). Self-regulation and behavior change: Disentangling behavioral initiation and behavioral maintenance. In K.D. Vohs & R.F. Baumeister (Eds.), Handbook of self-regulation: Research, theory, and applications (2nd ed., pp. 106–124). New York, NY: Guillford Press. Sandsund, C., Pattison, N., Doyle, N., & Shaw, C. (2013). Finding a new normal: A grounded theory study of rehabilitation after treatment for upper gastrointestinal or gynaecological cancers—The patient’s perspective. European Journal of Cancer Care, 22, 232–244. doi:10.1111/ecc.12016 Schultz, S.L., Dalton, S.O., Christensen, J., Carlsen, K., Ross, L., & Johansen, C. (2011). Factors correlated with fatigue in breast cancer survivors undergoing a rehabilitation course, Denmark, 2002–2005. Psycho-Oncology, 20, 352–360. doi:10.1002/pon.1739 Spence, R.R., Heesch, K.C., & Brown, W.J. (2010). Exercise and cancer rehabilitation: A systematic review. Cancer Treatment Reviews, 36, 185–194. doi:10.1016/j.ctrv.2009.11.003 Thorne, S., Kirkham, S.R., & MacDonald-Eames, J. (1997). Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing and Health, 20, 169–177. Ware, J.E., Jr. (2000). SF-36 health survey update. Spine, 25, 3130–3139. World Health Organization. (2013). Rehabilitation. Retrieved from http://www.who.int/topics/rehabilitation/en
E63
Copyright of Oncology Nursing Forum is the property of Oncology Nursing Society and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
![[Medical Rehabilitation in Gastrointestinal Oncology].](/assets/img/hold.png)
