Abstract
This study aimed to explore functional deficits and perceived quality of life (QoL) among cancer survivors. Sixty-six participants completed the Post Cancer Outcome Survey developed for the purpose of this study. The results indicated (1) modest to moderate degrees of functional deficits in 28 of the 70 items measuring areas of occupation, performance skills, body functions, and psychosocial well-being within the first year after cancer treatment; (2) significantly lower perceived QoL during the first year of survivorship compared with that before diagnosis, at present, and 5 yr hereafter (p < .001); (3) significant moderate negative correlations between the reported functional deficits and QoL (r s = –.45 to –.57); and (4) a very low percentage of participants (4.5%) receiving occupational therapy during the first year posttreatment. Functional difficulties and compromised QoL identified in this study indicate the need for occupational therapy among cancer survivors. Increasing clients’ awareness of occupational therapy for postcancer care is also suggested.
Keywords
About 1.4 million Americans are diagnosed with cancer each year (American Cancer Society, 2015). Because of advances in diagnosis and treatment, approximately two in three adults diagnosed with cancer today are expected to survive more than 5 yr (National Cancer Institute, 2012). These adults will likely undergo treatments such as surgery, chemotherapy, hormonal therapy, immunotherapy, and radiation as the primary intervention. These treatments, used either singly or in combination, can cause physical and mental hardships such as cancer-related fatigue, decreased sexual drive, mental confusion, chronic pain, nausea, incontinence, decreased range of motion, inability to eat or swallow, and lymphatic obstruction (Brearley et al., 2011).
Several population-based studies conducted in the United States and European countries have reported that, compared with the general population, cancer survivors in general demonstrate greater rates of stress and mental health symptoms and diminished quality of life (QoL; Baker, Haffer, & Denniston, 2003; Hoffman, McCarthy, Recklitis, & Ng, 2009; Salonen, Kellokumpu-Lehtinen, Tarkka, Koivisto, & Kaunonen, 2011). Measures in most cancer outcome studies have been found to focus on the physical and psychological deficits resulting from cancer or cancer treatment but have failed to fully address the broader issues related to changes in daily activities and life-role participation and how these changes may affect QoL of cancer survivors (Brearley et al., 2011; Brockow et al., 2004).
Brearley and colleagues (2011) conducted a comprehensive literature review pertaining to the needs of cancer survivors after primary cancer treatment. Although many health and medical issues surrounding the sequelae of the treatments were discussed in these studies, Brearley et al. called for more research exploring the daily challenges and psychosocial complications of cancer survivors to yield better and holistic interventions for the client population. More specifically, they identified some underresearched issues that merit future investigations: functional independence in daily activities, coping with everyday stressors, sexual activity, employment difficulties, and needs for further supportive care such as referrals to appropriate health care professionals.
A limited number of qualitative studies have reported occupational challenges and related psychosocial issues experienced by cancer survivors. For example, Palmadottir (2009) completed a qualitative inquiry using the Occupational Performance History Interview–II (Kielhofner, 2004) with women who survived breast cancer. The interview highlighted the women’s experiences and adaptation as they went through the process of breast cancer treatment and recovery. Three interwoven themes were identified: “being a patient,” “framing and resisting the illness,” and “adjusting to life with a shadow” (Palmadottir, 2009, p. 323). A passive role was generally perceived and assumed throughout the treatment process even though most participants did not want to be looked upon as a patient. Although extensive medical treatments were provided to cure the disease and alleviate the symptoms, the participants felt that psychological well-being and participation in meaningful occupations were normally not addressed by health care professionals (Palmadottir, 2009). Maintaining a steady occupational routine and seeking out health-promoting activities were prioritized by the participants as a form of resisting the disease and enhancing their sense of competence. Although the women in this study asserted that they managed to make a positive adjustment to the cancer experience, they constantly experienced “fear of reoccurrence of cancer” and thus lived their “life with a shadow” (Palmadottir, 2009, p. 328).
Similarly, we previously conducted a qualitative inquiry with cancer survivors to explicate the essences of psychosocial burden and to elaborate on how the psychosocial burdens affected their everyday life (Lokietz, Lozano, Parke, & Peyton, 2012). The psychosocial burdens experienced by the participants comprised the fear of sequelae of cancer treatment and the fear of cancer recurrence, which prevented them from feeling fully liberated despite their status of remission (Lokietz et al., 2012). Additionally, the participants’ experience of chronic anxiety was evidenced through their lasting efforts in trying to implement control over an unpredictable disease. It was found that the enduring psychosocial burdens often coexisted with the physical side-effects of cancer treatment (e.g., pain, fatigue, limited mobility), aggravating participants’ difficulty reengaging in meaningful occupations (e.g., work, leisure, socialization, sleep). Although the majority of participants attempted to find healthy outlets to deal with the hardships, the fear still affected them in a negative way for an extended period of time if not their entire life (Lokietz et al., 2012, p. 23). Moreover, the participants perceived “a gap in service following cancer treatment” and felt there was a need for a “bridge” to help them transition back into their everyday life (Lokietz et al., 2012, p. 23).
A diagnosis of cancer does not affect a person for just a short period of time or affect just one aspect of the person’s life. The multifaceted yet underresearched psychosocial and occupational issues revealed through the few existing studies on cancer survivorship manifest a very pertinent avenue for occupational therapy practitioners to explore further both in practice and in research.
The first objective of this study was to investigate the functional deficits experienced by cancer survivors from a broad perspective of occupational therapy, including areas of occupation, performance skills, body functions, and psychosocial well-being. Second, we examined perceived global QoL of cancer survivors in different stages of survivorship: before diagnosis, first year posttreatment, at present, and 5 yr from now. Third, we examined the correlations between levels of experienced deficits and perceived QoL among the survivors during the first year of survivorship. Additionally, we surveyed the use of and the perceived need for occupational therapy among the survivors after their primary care treatment. Findings from this study could inform occupational therapy practitioners about their role in helping cancer survivors transition back into their everyday life.
Method
Design
In this cross-sectional descriptive study we used a developed instrument to collect data on functional deficits, psychosocial burdens, and QoL recalled by cancer survivors.
Participants
The study sample consisted of 68 participants who had undergone and completed intensive cancer treatment. These participants were recruited by convenience and snowball sampling methods through professional and social networks and support groups for cancer survivors, including online support forums. All participants were between 18 and 64 yr of age, were diagnosed with cancer (any type and stage), had completed major cancer treatment (chemotherapy, radiation, or surgery), and felt that they could reflect on (and recall) the time period of 1 yr after major cancer treatment.
Instrumentation
The Post Cancer Outcome Survey (PCOS) developed for this study consists of four parts: (1) functional deficits, (2) perceived global QoL, (3) demographics and medical history, and (4) perceived need for occupational therapy. For the scale of functional deficits, we first reviewed the existing literature and our previous qualitative findings (Lokietz et al., 2012) to generate a list of 70 physical, cognitive, psychosocial, and functional issues commonly reported by cancer survivors. We then adopted the conceptual framework and terminology of the Occupational Therapy Practice Framework: Domain and Process (2nd ed.; the Framework; American Occupational Therapy Association, 2008) to organize the generated functional deficits into four subscales: Areas of Occupation (30 items such as bathing/showering, sleep, education, work, leisure, and social participation), Body Functions (10 items such as attention, memory, pain, moving function, and muscle strength), Performance Skills (16 items such as bending, reaching, maintaining balance, judgment, and multitasking), and Psychosocial Well-Being (14 items such as depressed, fearful, anxious, avoiding social situations and friends, and self-conscious). Participants were asked to recall the frequency of their deficits and difficulties in these four areas within the first year after the completion of primary cancer treatment. Responses were based on a 5-point Likert scale (1 = Never, 2 = Seldom or 25% of the time, 3 = Sometimes or 50% of the time, 4 = Often or 75% of the time, and 5 = Always or 100% of the time). Therefore, higher scores were indicative of higher levels of functional deficits.
The scale of perceived global QoL was modified from Cantril’s Self-Anchoring Striving Scale (or Cantril’s Ladder; Cantril, 1965). Cantril’s Ladder has been widely used in population-based survey and clinical outcome studies to examine peoples’ perceived global QoL or subjective well-being without imposing specific health, cultural, or socioeconomic standards (Kahneman & Deaton, 2010). Typically, respondents are shown a 10-rung ladder and asked to indicate where on the ladder (from 0 = Worst possible life to 10 = Best possible life) they would place themselves now, 5 yr ago, and 5 yr in the future. Construct validity has been demonstrated for Cantril’s Ladder by its correlations with other measures of QoL such as the Satisfaction With Life Scale (Beckie & Hayduk, 1997) and the SF–36 (McIntosh, 2001). For this study, participants were asked to rate their QoL during the following modified time periods: before the cancer diagnosis, within the first year after primary cancer treatment, at the time of the survey, and 5 yr after the survey.
The third section of the PCOS collected demographics and medical history. Demographics included gender, age, ethnicity, and employment status. Medical history covered cancer type, cancer stage, primary cancer treatment (e.g., surgery, chemotherapy, radiation, hormonal therapy), time since remission, and referral to health care professions posttreatment (e.g., occupational therapy, physical therapy, psychotherapy, social work).
Finally, to grasp participants’ perceived need for occupational therapy after their primary cancer treatment, we first provided a paragraph describing the potential roles of occupational therapy in cancer survivorship care. In particular, we highlighted possible interventions that could address the functional deficits identified in the first scale of the PCOS and introduced the concept of client-centered care (Lyons, 2006) that could help participants transition to a meaningful and productive life. Subsequently, participants responded by choosing “yes” (Yes, transitional help through occupational therapy would have been useful), “no” (No, I don’t feel like I could have used occupational therapy), or “not sure.” An optional comment box was also provided for participants to share thoughts or experiences they might have had with occupational therapy in cancer survivorship care. For those who might not have previous experience with occupational therapy, this section attempted to provide them with an opportunity to learn the profession’s roles in cancer survivorship care and to reflect on whether occupational therapy could have been a desired service in their survivorship care.
Before data collection, the PCOS was piloted using the methods of expert review and field pretesting. Expert reviewers were an oncologist and two social workers who specialized in working with cancer patients and their families. They reviewed the survey and provided feedback on the relevance and appropriateness of each question. Field pretesting was completed with seven respondents who participated in our previous qualitative study on cancer survivors (Lokietz et al., 2012). These respondents completed the survey and provided feedback on the content and the understandability of each question. Using the results from pilot testing, we made a few minor changes to the survey wording to improve question clarity. For example, jargon (e.g., hand dexterity) was replaced with lay terms (e.g., manipulating small objects). The final version of the PCOS was available in both hard copy and online formats.
Procedures
Institutional review board approval was obtained through California State University, Dominguez Hills, before data collection. Data were collected through convenience and snowball sampling methods with flyers (in both hard copy and online formats) distributed to facilities and professional and social networks. Recruitment sources generally included clients and acquaintances who met the inclusion criteria, participants of our previous qualitative study and members of their support groups, colleagues in occupational therapy programs, Facebook cancer survivor groups, and the Occupational Therapy Association of California membership directory. Prospective participants were directed to the study web link to verify their eligibility for inclusion, process informed consent, and complete the PCOS. Hard copies of all documents were also available for participants who preferred to use that format. No personally identifiable information was kept during the data collection process.
Data Analysis
Data collected were entered into IBM SPSS Statistics (Version 21; IBM Corp., Armonk, NY). Descriptive statistics and frequency analysis were used to summarize participants’ demographics and responses to the PCOS. A one-way repeated-measures analysis of variance (ANOVA) and Bonferroni post hoc multiple comparisons were used to compare perceived global QoL among participants across different time periods. Pearson’s product–moment correlation coefficient (Pearson’s r) was also used to examine the relationships between functional deficits and perceived global QoL during the first year after cancer treatment. The following cutoffs were used to interpret the strength of the relationships: r = 0–.20, negligible correlation; .20–.40, low correlation; .40–.60, moderate correlation; .60–.80, high correlation; and .80–1.00, very high correlation (Tomita, 2006). The significance level was set at .05.
Results
Among 68 participants recruited, 2 were excluded from the study because they did not meet the inclusion criteria. Table 1 summarizes demographics and medical history of the 66 participants. Most participants were White (81.8%) women (89.4%) ages 51–64 yr (66.7%) and employed full-time (42.4%). The most prevalent type and stage of cancer were breast cancer (53.0%) and Stage I (34.8%), respectively. The majority of participants underwent intensive treatments, including surgery (86.4%), chemotherapy (71.2%), and radiation (63.6%). The duration since cancer treatment completion varied throughout the sample, with the largest proportion of participants (34.8%) reporting a period of more than 5 yr. More than half of the participants (54.5%) indicated that they were not referred to any professionals for rehabilitative or supportive care after primary cancer treatment. Among 30 participants (45.5%) who received referrals, 13 had physical therapy (19.7%) and only 3 had occupational therapy (4.5%).
Participant Demographics and Medical History (N = 66)
Table 2 displays the means and standard deviations of the 5-point Likert scale scores on the functional deficits scale among the participants within the first year of survivorship. A mean rating ≥2.5 denotes functional deficit areas that participants experienced between 25% and 100% of the time. For the Areas of Occupation subscale, 10 of the 30 items had a mean rating ≥2.5, and among those, the most frequently reported difficulty areas were sexual activity, sleep, leisure participation, working out, and education participation. For Body Functions, 5 of the 10 items had a mean rating ≥2.5: physical energy/endurance, pain, muscle strength, memory, and attention. For Performance Skills, only 4 of the 16 items had a mean rating ≥2.5: managing stressful situations, emotionally recovering from hurt or disappointment, multitasking, and persisting with a task. For Psychosocial Well-Being, 9 of the 14 items had a mean rating ≥2.5, and among those, the most frequently reported areas were reluctant to start new relationships, worrying about family members' health, avoiding social situations, feeling fearful, and feeling depressed.
Mean Functional Deficit Scores the First Year After Cancer Treatment
Note. M = mean; SD = standard deviation.
Mean rating ≥2.5. bPositive items in Psychosocial Well-Being were scored reversely.
Table 3 presents the ranges, means, and standard deviations of perceived global QoL measured by the modified 10-rung Cantril’s Ladder for the four different time periods. A one-way repeated-measures ANOVA revealed statistical significance in the data, F (3, 260) = 19.03, p < .001. Bonferroni post hoc multiple comparisons further demonstrated that QoL within the first year posttreatment was significantly lower than QoL before diagnosis (p < .001), at present (p < .001), and 5 yr after the survey (p < .001). No significant differences in QoL were found among the other three time periods (i.e., prior, present, and future).
Perceived Global QoL During Four Time Periods (N = 66)
Note. M = mean; QoL = quality of life; SD = standard deviation.
Significant moderate negative correlations were found between each of the functional deficit subscales and the perceived global QoL and between the total of the functional deficit subscales and the perceived global QoL within the first year posttreatment (rs = –.45 to –.57). All correlations were significant at p < .001. The negative correlation between Psychosocial Well-Being deficits and QoL was highest (r = –.57), followed by that between Areas of Occupation difficulties and QoL (r = –.54).
Regarding the potential roles of occupational therapy in helping cancer survivors transition to a meaningful and productive life, 35 participants (53.0%) responded “yes” (“Transitional help through occupational therapy would have been useful”), 24 (36.4%) responded “no” (“I don't feel like I could have used occupational therapy”), and 7 (10.6%) responded “not sure.” Figure 1 displays comments provided by some participants regarding their views on or experiences with occupational therapy in cancer survivorship care.
Participants’ quotes on occupational therapy in cancer survivorship care.
Discussion
For many cancer survivors, cancer treatment saves their lives, yet leaves them with residual physical and psychosocial complications that prevent them from fully engaging in their everyday lives, in turn compromising their QoL. This study was conducted using the PCOS developed through the perspective of occupational therapy (i.e., the Framework) to investigate cancer survivors’ perceived functional difficulties, psychosocial burdens, and global QoL. Through the findings of this study, occupational therapy practitioners’ potential roles in bridging the service gap for cancer survivors are implied.
The participants reported their experienced deficits across the aspects of occupations, body functions, performance skills, and psychosocial well-being during the first year of survivorship. The various functional deficits recalled by our participants suggest a role for occupational therapy in helping them return to their previously performed and enjoyed occupations. As indicated by Palmadottir (2009), it is important that cancer survivors receive support in regaining their state of competence and normality after primary cancer treatment. To that end, occupational therapy practitioners should attend to the commonly observed deficits in body functions (e.g., pain, endurance, muscle strength, memory, attention) and determine how these deficits can cause limitations in performance skills (e.g., persisting with work, multitasking, managing stressful situations) and thus compromise occupations (e.g., work, education, leisure) of each client in cancer survivorship care.
Echoing the findings of previous studies (Hoffman et al., 2009; Lokietz et al., 2012; Salonen et al., 2011), our results also reveal that participants suffered psychosocial complications such as depression, anxiety, and social avoidance posttreatment, which could result from cancer-related fears and compromised coping mechanisms. Occupational therapy in cancer survivorship care should also assist in the development of supportive relationships and coping strategies and help clients reconnect with leisure activities, community participation, employment, and education.
The global QoL perceived by our participants was significantly lower during the first year of survivorship compared with their QoL before the cancer diagnosis, at the time of the survey, and 5 yr after the survey. This finding further supports the importance of addressing cancer survivors’ all-encompassing well-being and their need for ongoing service upon completion of primary cancer treatment (Baker et al., 2003; Salonen et al., 2011). In particular, functional and psychosocial issues that contribute to diminished QoL during the clients’ early survivorship merit practitioners’ close attention.
To explore the relationships between the recalled functional deficits and QoL in cancer survivors, we correlated perceived global QoL during the first year of survivorship with the results from the subscales of Areas of Occupation, Body Functions, Performance Skills, and Psychosocial Well-Being individually and in combination. The significant moderate negative correlations found throughout the domain of concern suggest the far-reaching, adverse effects of cancer and cancer treatment on everyday lives of the survivors. In addition, complex and multidimensional factors exist in the measure of QoL for cancer survivors (Baker et al., 2003; Salonen et al., 2011). For example, contextual factors such as family or social support and income sources were not included as covariates in our analyses. Therefore, high correlations between the variables of functional deficits and QoL were not found in this study.
Despite the fact that primary cancer treatment often results in unique complications, many of the resultant deficits are within the realm of and amenable to occupational therapy. Our ultimate interest in this study was to know whether occupational therapy was commonly used by the participants as part of their survivorship and supportive care. Surprisingly, compared with 13 participants (19.7%) who reported having a physical therapy referral for survivorship care, only 3 (4.5%) received occupational therapy. This finding, albeit dispiriting, echoes those of existing studies reporting underutilized occupational therapy services in cancer-related care (Pergolotti, Cutchin, Weinberger, & Meyer, 2014; Thorsen et al., 2011). A recent population-based study conducted by Pergolotti and colleagues (2014) found that, among the estimated 87% of older cancer survivors who were deemed in need of occupational therapy, only 32% used occupational therapy within the first 2 yr of their cancer diagnosis. Therefore, the authors called for strategies to promote awareness of the roles of occupational therapy in cancer survivorship care by both practitioners (e.g., physicians, oncologists, nurses) and clients (Pergolotti et al., 2014).
To further our line of inquiry, we attempted to bring occupational therapy to light for the participants by providing a jargon-free paragraph explaining the roles of occupational therapy in helping cancer survivors transition to a meaningful and productive life. As a result, more than half of the participants endorsed retrospectively that occupational therapy could have been helpful during those tough times after cancer treatment. Several noteworthy remarks given by the participants were recorded (Figure 1). Through these comments, some of the profession’s distinct roles in cancer survivorship care were illustrated in light of the participants’ real-life experiences and difficulties. Although the grounds for the dearth of occupational therapy in the participants’ survivorship care are unknown, the participants’ ultimate awareness and endorsement of the profession are potentially inspiring.
Limitations and Future Research
First, the relatively small sample of participants recruited through nonprobabilistic sampling procedures limits the generalizability of the results. Second, the PCOS directed participants to recall their functional deficits and QoL within the first year after primary cancer treatment. Participants’ levels of ability to retain information and recollect the temporal context could have affected the veracity of data. The PCOS (including its modified Cantril’s Ladder) was not tested for reliability and validity. Last, because of the nature of a descriptive study, potentially confounding personal and medical factors (e.g., age, gender, employment status, other noncancer diagnoses and treatment) that could play a role in determining participants’ levels of functional performance and QoL were not adequately controlled in data analyses. Likewise, this study did not attend to the distinction among various types and stages of cancer, which could also cause differences in severity and areas of difficulties experienced by participants. Therefore, caution in interpreting the results is warranted.
We call for longitudinal cohort studies using large samples and systematic control and analysis of multiple factors to strengthen both the validity and the depth of the exploratory findings of this study. Moreover, experimental or outcome studies examining the efficacy and effectiveness of occupational therapy in cancer survivorship care should be prioritized.
Implications for Occupational Therapy Practice
Psychosocial issues and functional difficulties resulting from cancer and cancer treatments can be multifarious. Occupational therapy practitioners are adequately equipped with knowledge and skills for maximizing clients’ QoL by addressing their difficulties with occupational performance. The following principles and strategies can be applied to delivery of occupational therapy for cancer survivorship care:
Client-centered evaluation should begin with an occupational history interview emphasizing the client’s strengths and coping strategies followed by careful assessment of limitations in various occupations and roles within the context of the client’s lifestyle demands and choices.
Wide-ranging approaches can be integrated into the client’s holistic treatment plan to improve various symptom-specific problems and occupation-based issues, such as energy conservation and coping and relaxation techniques for managing pain, fatigue, and sleep difficulty; exercise or leisure programs to improve strength and mobility; cognitive strategies, activity and work adaptation, and assistive technology to optimize performance in activities of daily living, education, and employment; support and volunteer groups for preventing social isolation and promoting psychosocial well-being; and lifestyle consultation for enhancing health and QoL.
Increased awareness of occupational therapy by clients and by practitioners (e.g., physicians, oncologists, nurse practitioners) can enhance access to and utilization of occupational therapy services in cancer survivorship care.
Footnotes
Acknowledgments
We express gratitude to all research participants for their time and contributions to this study.