Abstract
Worldwide, nearly 1 in 6 deaths are due to cancer (World Health Organization [WHO], 2017). Estimates are that 843,820 U.S. women were diagnosed with cancer in 2017, with breast, lung, and colorectal cancer being the most common types. Approximately 252,710 of these women will be diagnosed with invasive breast cancer (American Cancer Society, 2018). Improvements in early detection and advancements in medical treatments have led to women diagnosed with cancer living longer in the community (DeSantis et al., 2014; Siegel et al., 2012). The demand to provide support services for this growing population of cancer survivors is becoming a national concern, and occupational therapy practitioners are ideally placed to address their multifaceted needs.
Currently, cancer survivors are often left to figure out the transition from active medical treatment to functioning in the community on their own. However, cancer and its treatments have numerous effects that lead to poor health and quality of life (QOL). Fatigue, fear of recurrence, family and caregiver distress, psychosocial distress, feelings of isolation, and loss of role identity have all been identified by women as consequences of a cancer diagnosis (Andreu et al., 2012; Bevans & Sternberg, 2012; Bower et al., 2014; Crist & Grunfeld, 2013; Gibson et al., 2016; Lutgendorf et al., 2012). These consequences can interfere with women returning to their everyday activities and limit their ability to participate in their roles, habits, and routines.
Despite the need for support services for cancer survivors, numerous studies have shown that these services are underused, including occupational therapy. A study of breast cancer survivors by Thomas-MacLean et al. (2008) showed that almost 12% experienced lymphedema, 39% reported pain, and 50% had range-of-motion restrictions, but most never spoke to a health care professional about exercise. Another study that looked at cancer-related physical impairment in community-dwelling patients with metastatic breast cancer showed that 92% required some form of rehabilitation, but only 30% received treatment. Nontreatment was mainly seen in patients of low socioeconomic or minority status (Cheville, Troxel, Basford, & Kornblith, 2008). Pergolotti, Cutchin, Weinberger, and Meyer (2014) also found that older adults with cancer had limited access to occupational therapy services despite their activity of daily living needs.
Silver and Gilchrist (2011) recommended an increase in oncology rehabilitation research specific to interventions, including occupational therapy, that are effective with this population. Therefore, in this study we evaluated the impact of Camp Discovery, a 1-wk community- and activity-based program, on the health, QOL, and occupational performance of women diagnosed with cancer. The program follows an occupation-focused, health promotion approach for women at all stages of cancer, across various geographic locations, and from lower socioeconomic communities. Our focus was on women because their psychological and socioeconomic distress is more severe and they are less physically active than men, particularly minority women (Siegel et al., 2012; Stephens, Westmaas, Kim, Cannady, & Stein, 2016). These health disparities have a significant impact on women’s QOL.
Research Questions
The research questions for this study were as follows: After participation in Camp Discovery,
Do women diagnosed with cancer show improvement in functional health (36-Item Short Form Health Survey [SF–36]; McHorney, Ware, & Raczek, 1993; Stewart et al., 1989) and QOL (WHO Quality of Life–Brief version [WHOQOL–BREF]; Bonomi, Patrick, Bushnell, & Martin, 2000) from initial pretest to 6-wk follow-up?
Do women diagnosed with cancer show improvement in occupational performance and satisfaction (Canadian Occupational Performance Measure [COPM]; Dedding, Cardol, Eyssen, Dekker, & Beelen, 2004; McColl, Paterson, Davies, Doubt, & Law, 2000) from initial pretest to 5-day posttest and 6-wk follow-up?
Method
Research Design
This study used a prospective, one-group pretest–posttest design to explore the effects of a 1-wk activity-based program on functional health (SF–36), QOL (WHOQOL–BREF), and self-perceived occupational performance and satisfaction (COPM) of community-living women diagnosed with cancer. All three assessments were administered at pretest (Day 1) and 6-wk follow-up. In addition, the COPM was administered at posttest (Day 5). This study received institutional review board approval.
Sample and Setting
The study was powered on the first research question. A priori power analysis using G*Power 3 (Heinrich Heine Universität Düsseldorf, Düsseldorf, Germany) for a dependent-sample t test with power of .8, a Type I error (i.e., α) set at .008, and a medium effect size (d = 0.5) indicated a required sample size of 46. In addition, to detect a medium effect size (f = 0.25) in a repeated-measures analysis of variance (ANOVA) with a power of .8 and a Type 1 error of .025, we needed a sample size of 34. Taking into account attrition rates (25%), we targeted a sample size of 70 women diagnosed with cancer for this study (Cohen, 1992; Faul, Erdfelder, Lang, & Buchner, 2007). We purposively recruited 77 community-living women diagnosed with cancer for this study.
Women diagnosed with cancer are also referred to as survivors, which the American Cancer Society (2014) defined as “any person who has been diagnosed with cancer from the time of diagnosis through the balance of life” (p. 1). Women were included irrespective of phase of survivorship; for example, years since diagnosis ranged from 6 mo to 25 yr and phase of treatment ranged from currently in active treatment (radiation or chemotherapy) to 25 yr since last treatment.
We targeted urban, suburban, and rural areas in Pennsylvania and New Jersey, specifically underserved areas. Recruitment flyers were posted in clinics, hospitals, community centers, churches, and support communities. Women were eligible for this study if they had cancer, were age 21 yr or older, and had clearance from a physician to participate in the program. The camps were conducted in large community rooms at different locations that could accommodate approximately 30 individuals, with outdoor spaces used for activities as appropriate.
Intervention
The intervention for this study was a 1-wk activity-based program that spanned 5 days and ran from 9:00 a.m. to 1:00 p.m. and addressed the QOL, health, well-being, and occupational performance of women diagnosed with cancer. The camp was supervised by two occupational therapists and carried out by occupational therapy students. Professional instructors were hired or volunteered to teach each of the classes (four classes daily). Students were responsible for teaching two classes per week to provide them with additional leadership experience. A healthy snack was provided daily. The program was based on the fundamentals of the Occupational Therapy Practice Framework: Domain and Process (3rd ed.; American Occupational Therapy Association, 2014). Types of activities included physical (e.g., dance and Tai Chi), emotional (e.g., poetry and scrapbooking), spiritual (e.g., meditation and yoga), sensory (e.g., gardening and cooking), and educational (e.g., nutrition and resources). All of the activities included a social and cognitive component. The activities varied between each camp but were similar in these components, time frame, and number of days.
Outcome Measures
We used three outcome measures. The first, the SF–36, is a generic measure that includes 36 questions. It provides a profile of functional health and well-being in the form of physical and mental health summary scores (McHorney et al., 1993; Stewart et al., 1989).
The second outcome measure, the WHOQOL–BREF, assesses people’s perceptions of their quality of life in the context of their culture and value systems and their personal goals, standards, and concerns. It includes 26 questions and provides summary scores for physical health, psychological health, social relationships, and environment (Bonomi et al., 2000).
The third outcome measure was the COPM, an individualized, client-centered outcome instrument used to measure changes in a client’s self-perception of occupational performance and satisfaction over time (Dedding et al., 2004; McColl et al., 2000). All three assessments have been extensively tested for reliability, validity, and sensitivity and have been established as useful outcome measures for people with a variety of diagnoses, including cancer (Bonomi et al., 2000; Dedding et al., 2004; McHorney et al., 1993).
Procedures
We recruited 15–25 women for each of eight activity-based programs (camps) over a span of 3 yr. Women interested in participating in the camp called the principal researchers (the authors) to indicate their interest. We sent welcome packets to the participants with a weekly schedule, an informed consent form, and instructions to obtain a medical clearance form from their physician. On the first day, researchers collected the medical clearance and informed consent forms from the participants.
Trained data collectors administered the outcome measures at each camp. All three instruments were administered on the first day of the camp (pretest). A brief description of the SF–36 and WHOQOL–BREF was provided to the participants, and they were asked to fill the questionnaires out independently. On completion of these two assessments, the data collectors administered the COPM individually to each participant; each woman identified and ranked five occupational goals and rated their current performance of and satisfaction with each of those goals. On the last day of the camp (posttest), the COPM was readministered; participants reranked their performance of and satisfaction with their previously identified goals. All three assessments were readministered 6 wk after completion of the program (follow-up).
Data Analysis
We analyzed the data with IBM SPSS Statistics (Version 23.0; IBM Corp., Armonk, NY). Demographic data were collected and summarized. Incomplete assessment data were excluded from the analyses. Six paired t tests with a Bonferroni correction (α set at .008) were conducted to evaluate differences between pretest and follow-up scores for the SF–36 and the WHOQOL–BREF. Pitman–Morgan tests for homogeneity of variance for the pairs did not indicate any significant differences between the variances of any two corresponding SF–36 and WHOQOL–BREF scores.
Two repeated-measures ANOVAs with a Bonferroni correction (α set at .025) were conducted to evaluate differences among pretest, posttest, and follow-up assessments for the COPM performance and satisfaction scores. Post hoc analyses with Bonferroni corrections were conducted for all significant findings. Mauchly’s test of sphericity showed that the assumption of sphericity was significant for COPM performance scores but not for COPM satisfaction scores. A Greenhouse–Geisser adjustment was applied to the degrees of freedom for the ANOVA for the COPM performance analysis (Portney & Watkins, 2009).
We used Cohen’s d z to calculate effect sizes for the paired-sample t tests (SF–36 and WHOQOL–BREF) and pairwise comparisons (COPM performance and satisfaction scores). Results were interpreted as follows: 0.10, small effect; 0.30, medium effect; and 0.50, large effect (Cohen, 1988, 1992). Partial η2 (ηp 2) was reported as the effect size for the COPM repeated-measures ANOVAs, with .01 indicating a small effect; .06, a medium effect; and .14, a large effect for interpretation (Cohen, 1988; Miles & Shevlin, 2001).
Results
Seventy-seven women diagnosed with cancer participated in Camp Discovery. We lost 6 women during the week (2 to medical appointments, 3 to fatigue, and 1 who did not continue with no further communication). Data collection began in July 2012 and was completed in September 2014. Pretest data were collected on the first day of the program, posttest data were collected on the last day (Day 5), and follow-up data were collected 6 wk after completion of the program. Table 1 presents key participant demographic characteristics.
Demographic Characteristics of Participants
Note. N = 71. Percentages may not total 100 because of rounding.
Some participants reported >1 ethnicity.
Table 2 shows the differences in pretest and follow-up scores for the SF–36 and WHOQOL–BREF as measured by paired t tests. A significant difference was obtained for the WHOQOL–BREF Social Relationships subscale from pretest to 6-wk follow-up with a moderate effect, t(61)=−3.299, p = .002, d z = 0.37. No significant differences were found for any other SF–36 and WHOQOL–BREF subscales, although the SF–36 Mental Health subscale approached a moderate effect size (d z = 0.28).
Comparison of the Differences in SF–36 and WHOQOL Scores From Pretest (Day 1) to Follow-Up (Week 6)
Note. α < .008. df = degrees of freedom; SD = standard deviation; SF–36 = 36-Item Short Form Health Survey; WHOQOL–BREF = World Health Organization Quality of Life–Brief version.
Two repeated-measures ANOVAs were conducted to determine whether there was a difference between the COPM performance and satisfaction scores from pretest (Day 1) to posttest (Day 5) to follow-up (Wk 6), as shown in Table 3. A Bonferroni correction with α set at .025 was used. The repeated-measures ANOVA with a Greenhouse–Geisser correction determined that COPM performance differed statistically significantly at the three time points, F (1.773, 108.143) = 36.374, p = .000. A large effect size (ηp 2) of .374 for performance scores was obtained. The repeated-measures ANOVA for COPM satisfaction was also statistically significant, F (2, 122) = 27.254, p = .000. In this case, too, a large effect size (ηp 2 =.309) was obtained. Post hoc analyses were conducted for performance and satisfaction across the different time points using a Bonferroni correction with α set at .008. The results of these analyses are shown in Table 4. All comparisons were significant (p < .003). Large effect sizes were found for comparisons from pretest to posttest and from pretest to follow-up for both performance and satisfaction (d z s = 0.523–0.673). Small effect sizes were found for comparisons from posttest to follow-up (d z s = 0.231–0.245).
Comparison of the Differences in COPM Scores From Pretest (Day 1) to Posttest (Day 5) to Follow-Up (Week 6)
Note. α < .025; all ps = .000. Analysis of variance with a Greenhouse–Geisser correction. COPM = Canadian Occupational Performance Measure; df = degrees of freedom; MS = mean squares; SD = standard deviation; SS = sum of squares.
Post Hoc Comparisons of the Differences in COPM Performance and Satisfaction Scores Across the Three Time Points
Note. α < .008. Pretest = Day 1; posttest = Day 5; follow-up = Wk 6. COPM = Canadian Occupational Performance Measure.
Discussion
This study examined changes in functional health, QOL, self-perceived occupational performance, and satisfaction with performance of community-living women diagnosed with cancer after participation in Camp Discovery. Past research has shown that cancer has tremendous physical, psychological, and social consequences (Bower et al., 2014; Kim, Shaffer, Carver, & Cannady, 2016; Koch, Jansen, Brenner, & Arndt, 2013; Mackenzie, Carey, Sanson-Fisher, & D’Este, 2013). Gaps in the transition from medical or oncology care to community functioning have been documented in the literature. In addition, the absence of a clear rehabilitation intervention has been shown to have an impact on daily functioning for people with cancer (Silver & Gilchrist, 2011). The results of this study correlated with those of past research, showing that creative interventions and physical activity, when provided as independent interventions, improved emotional and social well-being (Archer, Buxton, & Sheffield, 2015; Midtgaard et al., 2015). However, Camp Discovery included a combination of creative and physical interventions in the community using an occupation-based framework.
Results showed no significant changes in functional health as measured by the SF–36, although the SF–36 Mental Health subscale approached a moderate effect size. In addition, only results for the Social Relationships subscale of the WHOQOL–BREF were significantly different from pretest to follow-up with a moderate effect. Thus, results show that the program had more of an impact on social relationships and mental health than on physical functioning as measured with these two assessments. No past literature has measured the effectiveness of a program such as Camp Discovery, but it is plausible that these two assessments might not be able to measure changes in functioning in programs such as the one used in this study. Past studies have shown that social support is an important predictor of health-related QOL and that participation in exercise-based rehabilitation is a means to fulfill the mental and social well-being of adults with cancer (Archer et al., 2015; Leung, Pachana, & McLaughlin, 2014). Therefore, although the results were not significant, on the basis of past literature the changes in the Social Relationships and Mental Health subscales might be the precursor to improved QOL.
The results for the COPM showed significant differences from pretest to posttest, pretest to follow-up, and posttest to follow-up, indicating that in the area of self-identified occupational goals, participants demonstrated significant improvements in both performance and satisfaction with moderate to large effect sizes. This implies that participation in the program translated into improvements in occupational functioning. In addition, participants perceived that their performance improved, and they were satisfied with the improvements. This has tremendous implications that highlight the role of being engaged in activities and its impact on functioning, further validating the use and sensitivity of the COPM with people with cancer (Hauken, Holsen, Fismen, & Larsen, 2014; Huri, Huri, Kayihan, & Altuntas, 2015; Simmons, 2015).
The COPM results did not correlate with those obtained with the SF–36 and WHOQOL–BREF. This might indicate that the effectiveness of programming such as Camp Discovery might best be detected by client-centered assessments such as the COPM. However, it would be useful for occupational therapy interventions to demonstrate changes on widely used outcome measures. Although significance was not obtained for most of the SF–36 and WHOQOL–BREF subscales, the effect sizes for SF–36 Mental Health approached a moderate effect, and those for WHOQOL–BREF Physical Health and Environment approached a small effect.
Limitations
This study had a few limitations. We chose to recruit both women who had completed treatment and those who were in active treatment for both acute and metastatic cancer. We lost 6 women from the study as a result of medical issues. We might have seen greater effects if we had chosen only women who had completed treatment.
The assessments used in the study were time consuming, and certain questions on the assessments, especially those related to sexual functioning, were traumatic for women with certain types of cancer (e.g., ovarian cancer, breast cancer, uterine cancer). Follow-ups were also challenging, and we had to reach out to the women multiple times to obtain the follow-up data.
Future Research
Future studies should target larger sample sizes, which might be effective in demonstrating significant differences. Also, it would be interesting to examine the differences among women with different types of cancer to evaluate whether there are differences in physical, mental health, and emotional functioning depending on the type of cancer. On the basis of our experiences with the assessments in this study (SF–36 and WHOQOL–BREF), we recommend that future studies choose assessments that are more sensitive to participants’ diagnoses. It is also important to evaluate the impact of community programs such as Camp Discovery on cancer-specific symptoms such as fatigue and pain. Finally, we focused on women diagnosed with cancer, but it is possible that this type of program may benefit men, children, siblings, and caregivers affected by cancer.
Implications for Occupational Therapy Practice
This study establishes that there are benefits to developing activity-based programs for community-living women diagnosed with cancer.
Results from the WHOQOL–BREF indicate that this kind of program leads to the development of social relationships that may ameliorate feelings of isolation and loss of identity and lead to improved QOL.
Results from the COPM demonstrate that participation in an activity-based program can improve a female cancer survivor’s perception of her performance of and satisfaction with meaningful occupations.
Camp Discovery can be used as a community-based model for occupational therapy within the continuum of care to address the needs of female cancer survivors.
Footnotes
Acknowledgments
We thank the Cancer Support Community of Greater Philadelphia, PA; Gilda’s Club of Delaware Valley in Warminster, PA; and Evelyn Rodriguez and the MD Anderson Cancer Center at Cooper in Camden, NJ, for their invaluable support in promoting the program and recruiting participants. We also thank the students from the Department of Occupational Therapy, University of the Sciences in Philadelphia, for their assistance with this project. This work was supported by funding from the Dolfinger-McMahon Foundation Grant and Genesis CARES at the University of the Sciences in Philadelphia. This study was presented at the American Occupational Therapy Association Annual Conference & Expo in April 2014 and April 2016. This trial has been registered at
(NCT02761824).
