Abstract
Background:
Approximately 5 million Americans are living with metastatic cancer. Metastatic cancer survivors (MCS) are at risk for poor health behaviors, which may negatively influence wellbeing.
Methods:
Using a modified Dillman protocol, 542 MCS were mailed a survey querying physical and mental health (PROMIS® measures), health behaviors, and supportive care interest. Returned surveys were double-key entered into REDCap®. Data were analyzed using SPSS.
Results:
Two hundred seventy-seven surveys were returned (51% response). Respondents (51% female; 88% Caucasian; 12% African-American; Mage=65 years; Msurvivorship=38 months; 23% female cancers, 23% melanoma, 21% gastrointestinal, 15% genitourinary, 12% pulmonary, and 6% other) reported low daily fruit and vegetable (F&V) intake (M=4.1) and weekly minutes of moderate-to-vigorous physical activity (PA) (M=41.9), with 66% of respondents having overweight or obesity. While mean scores for physical (M=43.6) and mental (M=47.7) health were considered “good,” scores in the “fair” to “poor” ranges were observed (40% physical; 23% mental). MCS meeting PA (≥150 min per week) and dietary (≥5 daily servings of F&V) guidelines reported better physical (p=.003; p=.056) and mental (p=.033, p=.549) health respectively, compared to MCS who were not. While current supportive care use was low (12%), future interest was high (57%), with greatest interest for nutrition (46%), MCS support group (38%), and gardening (31%).
Conclusions:
Our findings suggest that engaging in regular PA and consuming more F&Vs may enhance physical and mental health among MCS. Future research may explore supportive care approaches with high interest, such as gardening, to aid MCS in improving key health behaviors.
Keywords: Metastatic Cancer, Health Behaviors, Psychosocial Wellbeing, Supportive Care
Introduction
There are more than 16 million cancer survivors in the United States (U.S.), of which 10-30% are living with metastatic cancer [1, 2]. Metastatic cancer survivors (MCS) are those in whom cancer has spread distantly beyond the primary cancer site either at the point of diagnosis or sometime during the survivorship trajectory. Because more and more Americans are developing cancer due to the aging of the population, and more are surviving their initial cancer as well as surviving after a diagnosis of metastatic spread due to improvements in therapeutics, the number of MCS is growing rapidly [1-3]. While treatments for metastatic cancer have increased survival time, especially among metastatic breast, prostate and colorectal cancer survivors who may live 2-5 years with metastatic disease [1, 2, 4], longer survival time necessitates an increased need for services and research on how to improve health behaviors, physical and mental wellbeing, and the quality of survival [5]. MCS are at an increased risk for poor health behaviors (e.g., diets low in fruits and vegetables and physical inactivity) and psychosocial distress, which may negatively influence treatment adherence, decision-making, relationships with health care providers, and quality-of-life [6, 7]. A particularly vulnerable group of MCS are those living in Alabama. In Alabama, cancer incidence and mortality are higher than the national average [8], potentially due to the prevalence of obesity, physical inactivity, poor diet, and use of tobacco [9]. While the American Society of Clinical Oncology recommend early palliative and supportive care for those living with metastatic disease [10], access to palliative and supportive care in Alabama is poor. Recently, in a 2019 State-by-State Report Card on supportive and palliative care access, Alabama received a grade of “D” [11]. Yet, few investigators are addressing the needs of this unique, underserved population. Specific aims of this cross-sectional survey study were to explore current health behaviors, supportive care use and interest, and wellbeing among a diverse group of MCS residing Alabama, and to examine differences in responses by cancer site (i.e., female cancers, genitourinary, gastrointestinal, pulmonary, melanoma, and other).
Methods
We conducted a cross-sectional mail survey study among a census of patients diagnosed with non-hematologic metastatic cancer at the O'Neal Comprehensive Cancer Center at the University of Alabama at Birmingham (UAB). The study protocol received approval from the UAB Institutional Review Board. Participant consent was implied through voluntary completion of the study survey.
Participants
Adult (≥21 years) MCS were identified via the UAB Cancer Registry and I2B2 (Informatics for Integrating Biology and the Bedside), resulting in an initial listing of 2,508 MCS. I2B2 is an NIH-funded National Center for Biomedical Computing (NCBC) developed to leverage existing data for research cohort discovery [12]. To prevent unnecessary burden on potential participants and their families, the electronic medical record (EMR) was reviewed and online obituary searches were conducted, revealing 1,900 ineligible cases (1,486 deceased; 304 incorrect diagnosis of metastatic disease; 86 hospice care; 15 no mailing address, 9 < 21 years of age). Physician approval to contact was obtained from treating oncologists for 579 potential participants. See Figure 1 for Consort Diagram. Anticipating that 579 surveys would be mailed and a response rate of 40%, completed survey data for 232 MCS was forecasted. The estimated 40% response rate was based on the MCS population, a population apt to be sick, and prior mail surveys utilizing methods by Dillman et al.[13].
Figure 1.
Consort diagram
Procedures
To respect that this population of MCS is apt to be sick and to minimize participant burden, the traditional Dillman mailed survey protocol was modified to be less intrusive and is outlined as follows [14]. A pre-notice letter was sent to patients to inform them that they soon would receive a survey to be completed and offered an opt-out option. Five days later, a paper survey and cover letter, along with a postage paid pre-addressed return envelope, were mailed. A postcard was sent one week later that expressed thanks to individuals if they had returned a survey and if not, to prompt them to please do so. Three weeks after the postcard, if no survey had been received, a replacement survey was sent. A thank-you letter and a $2 book of stamps (token of appreciation) were sent to MCS who completed surveys. Surveys were posted between March and August 2019, and completed surveys were received until September 2019. Returned surveys were reviewed for completeness. If incomplete, a member of the study team immediately followed-up with respondent via telephone. Data were double-key entered into REDCap (Research Electronic Data Capture), a secure web-based software platform designed to support data capture for research studies [15].
Study Survey
The 8-page survey was comprised of validated and widely-used scales and subscales, including PROMIS® (Patient-Reported Outcomes Measurement Information System) Measures [16]. Short form-measures were selected to reduce participant burden. Colorful headers and large font were used to engage participants and enhance response rates [17].
Demographic and Cancer-related Data.
Self-reported demographic and cancer-related health data included education, marital status, employment status, income, household size, smoking status, alcohol consumption, body weight and height, and cancer treatment status. EMR verified demographic and cancer-related data included age, gender, race, date that metastatic disease was first diagnosed, and primary cancer site.
Health Behaviors
Fruit and Vegetable Intake.
Fruit and vegetable (F&V) intake data were collected using the NCI Eating at America’s Table Screener (EATS) [18], a 10-item food frequency questionnaire assessing F&V intake over the previous one month.
Physical Activity.
Physical activity (PA) data were collected using a modified Godin Leisure-Time Exercise Questionnaire [19]. Participants self-reported the average weekly time spent engaging in vigorous (rapid heartbeat), moderate (not exhausting), and mild (minimal effort) PA.
Physical and Psychosocial Wellbeing.
PROMIS measures were used to assess physical and psychosocial wellbeing [20-23]. PROMIS measures use a T-score metric in which 50 is the mean of the general U.S. population and 10 is the standard deviation. Higher scores indicate more of the concept being measured, which may be advantageous (physical function) or disadvantageous (depression). PROMIS measures utilized included Global Health [21], Anxiety [22], Depression [22], Social Isolation [20], Social Support [20], and Meaning and Purpose [23].
Supportive Care Use and Interest.
Supportive care use and interest were assessed via an investigator developed 3-item questionnaire. Two questions queried current and previous supportive care use and one question queried interest in future supportive care programs. Future supportive care program options included in the survey (i.e., nutrition & cooking classes, metastatic cancer support group, gardening, yoga & meditation, art therapy, and journaling) were derived from existing programs for survivors of early stage cancers, as there currently are no existing programs specifically for MCS.
Statistical Analyses
Data were analyzed using SPSS V-26. The significance level was set at 0.05 and was not corrected for multiple comparisons, as this was an exploratory study. Descriptive statistics were conducted for the sample characteristics. Frequencies and percentages were used to describe all categorical variables. Means and SDs were generated for scores on all continuous variables. Preliminary analyses were conducted to examine whether there were any group differences between survey responders and non-responders (e.g., time since diagnosis, cancer type, age, gender, race) using independent sample t-tests or Pearson’s chi-square tests when appropriate. Among responders, differences between cancer types were tested using Chi-Square, Kruskal–Wallis, or Fisher Exact tests. Multiple regression analyses were used to explore associations between health behaviors and physical and mental health. A post hoc power analysis was conducted using G*Power [24]. The study sample size of 277 was used for the statistical power and a 10 predictor variable equation was used as a baseline. Alpha level of p < .05 and a medium effect size (f 2 = .15) were used for the analysis. The post hoc analyses revealed the statistical power for this study to be .99.
Results
The potential evaluable sample comprised 542 MCS (Figure 1). Most were Caucasian (79%) and the distribution among cancer types was 23% gastrointestinal, 22% female cancers, 19% melanoma, 15% genitourinary, 13% pulmonary, and 8% other. A 51% response rate was achieved overall. Non-responder analyses (Table 1) revealed significant differences in age, race, and time since metastatic diagnosis. Responders (n=277) tended to be older, Caucasian, and living longer with metastatic disease. There were no significant differences by gender, cancer type, or residence (rural vs urban).
Table 1.
Survey Responders vs. Non-Responders (N=542)
| Variables | Total (N=542) | Responders (n=277) | Non-Responders (n=265) | Difference | |||
|---|---|---|---|---|---|---|---|
| Mean (SD) Range |
n (%) | Mean (SD) Range |
n (%) | Mean (SD) Range |
n (%) | P | |
| Age (years) | 61.5 (12.95) 25-93 |
65.1 (12.28) 25-90 |
57.9 (12.62) 25-93 |
<.001a | |||
| Time since metastatic diagnosis (months) | 31.8 (24.94) 3-189 |
36.6 (30.06) 3-189 |
26.7 (16.74) 4-88 |
<.001a | |||
| Cancer Type | 0.132b | ||||||
| Female Cancers | 119 (22%) | 64 (23.1%) | 55 (20.8%) | ||||
| Genitourinary | 83 (15.3%) | 40 (14.4%) | 43 (16.2%) | ||||
| Gastrointestinal | 125 (23.1%) | 57 (20.6%) | 68 (25.7%) | ||||
| Pulmonary | 70 (12.9%) | 34 (12.3%) | 36 (13.6%) | ||||
| Melanoma | 103 (19%) | 64 (23.1%) | 39 (14.7%) | ||||
| Other | 42 (7.7%) | 18 (6.5%) | 24 (9.1%) | ||||
| Gender | 0.871b | ||||||
| Female | 276 (50.9%) | 142 (51.3%) | 134 (50.6%) | ||||
| Male | 266 (49.1%) | 135 (48.7%) | 131 (49.4%) | ||||
| Race | <.001b | ||||||
| African-American | 116 (21.4%) | 32 (11.6%) | 84 (31.7%) | ||||
| Caucasian | 426 (78.6%) | 245 (88.4%) | 181 (68.3%) | ||||
| Rural Residence | 0.093b | ||||||
| Yes | 249 (45.9%) | 137 (49.5%) | 112 (42.3%) | ||||
| No | 293 (54.1%) | 140 (50.5%) | 153 (57.7%) | ||||
Kruskal Wallis test
Chi-Square test
Participant Characteristics
Sociodemographic and cancer treatment characteristics of the full respondent sample are provided in Table 2. Overall, respondents were older Caucasians who were married, retired or disabled, and currently receiving cancer treatment. On average respondents had been living with metastatic disease for approximately 3 years. Cancer types consisted of female cancers (n=64), melanoma (n=64), gastrointestinal (n=58), genitourinary (n=40), pulmonary (n=34), and other (n=17). Other cancers consisted of thyroid, sarcoma, and unknown. Significant cancer group differences were observed with regard to age, time since diagnosis, gender, race, marital status, and receiving cancer treatment.
Table 2.
Participant Characteristics (N=277)
| Variables | All (N=277) % (n) |
Cancer Types | P value | |||||
|---|---|---|---|---|---|---|---|---|
| Female Cancers (n=64) % (n) |
Genitourinary (n=40) % (n) |
Gastrointestinal (n=58) % (n) |
Pulmonary (n=34) % (n) |
Melanoma (n=64) % (n) |
Other (n=17) % (n) |
|||
| Age (years) | .006a | |||||||
| Mean (SD) | 65.1 (12.27) | 63.3 (11.10) | 66.9 (10.70) | 61.7 (12.12) | 70.5 (9.16) | 66.2 (14.21) | 63.53 (14.48) | |
| Range | 25-90 | 34-83 | 37-84 | 32-90 | 52-84 | 25-88 | 30-84 | |
| Survivorship (months) | ||||||||
| Mean (SD) | 37.8 (30.14) | 31.6 (26.92) | 43.9 (35.52) | 38.3 (30.07) | 24.7 (8.26) | 43.8 (28.25) | 48.8 (48.54) | .001a |
| Range | 3-190 | 3-174 | 6-190 | 5-185 | 8-37 | 8-131 | 11-188 | |
| Gender | <.001b | |||||||
| Female | 51.3% (142) | 100% (64) | 10% (4) | 46.6% (27) | 58.8% (20) | 29.7% (19) | 47.1% (8) | |
| Male | 48.7% (135) | 0 | 90% (36) | 53.4% (31) | 41.2% (14) | 70.3% (45) | 52.9% (9) | |
| Race | .013c | |||||||
| African-American | 11.6 % (32) | 18.8% (12) | 10% (4) | 15.5% (9) | 8.8% (3) | 1.6% (1) | 11.8% (2) | |
| Caucasian | 88.4% (245) | 79.7% (51) | 90% (36) | 84.5% (49) | 91.2% (31) | 98.4% (63) | 88.2% (15) | |
| Educational Attainment | .672c | |||||||
| High school or less | 32.9% (91) | 32.8% (21) | 22.5% (9) | 34.5% (20) | 47.1% (16) | 32.8% (21) | 23.5% (4) | |
| Some College | 32.5% (90) | 31.3% (20) | 32.5% (13) | 32.8% (19) | 23.5% (8) | 37.5% (24) | 35.3% (6) | |
| College Graduate | 34.7% (96) | 35.9% (23) | 45% (18) | 32.8% (19) | 29.4% (10) | 29.7% (19) | 41.2% (7) | |
| Marital Status | .001c | |||||||
| Married | 67.5% (187) | 56.2% (36) | 87.5% (35) | 62.1% (36) | 58.8% (20) | 79.7% (51) | 52.9% (9) | |
| Divorced or Separated | 14.1% (39) | 14.1% (9) | 10% (4) | 15.5% (9) | 14.7 % (5) | 10.9% (7) | 29.4% (5) | |
| Widowed | 12.3% (34) | 18.8% (12) | 2.5% (1) | 13.8% (8) | 26.5% (9) | 6.3% (4) | 0 | |
| Never Married | 6.1% (17) | 10.9% (7) | 0 | 8.6% (5) | 0 | 3.1% (2) | 17.6% (3) | |
| Employment Status | .084c | |||||||
| Employed | 28.2% (78) | 20.3% (13) | 40% (16) | 25.9% (15) | 17.6% (6) | 34.4% (22) | 35.3% (6) | |
| Unemployed | 7.2% (20) | 14.1% (9) | 0 | 5.1% (3) | 8.8% (3) | 4.7% (3) | 11.8% (2) | |
| Retired/Disabled | 64.6% (179) | 65.6% (42) | 60% (24) | 69% (40) | 73.5% (25) | 60.9% (39) | 52.9% (9) | |
| Household Size | ||||||||
| Mean (SD) | 2.2 (1.14) | 2.2 (1.23) | 2.5 (1.20) | 2.2 (1.09) | 2.0 (1.11) | 2.4 (1.11) | 1.9 (0.83) | .179a |
| Range | 1-7 | 1-7 | 1-6 | 1-6 | 1-7 | 1-6 | ||
| Household Income | .681b | |||||||
| Lower: <$40,000 | 27.1% (75) | 26.6% (17) | 22.5% (9) | 32.8% (19) | 32.4% (11) | 21.9% (14) | 29.4% (5) | |
| Moderate: $40,000-$60,000 | 17.7% (49) | 18.8% (12) | 22.5% (9) | 12.1% (7) | 8.8% (3) | 23.4% (15) | 17.6% (3) | |
| Higher: >$60,000 | 35% (97) | 29.7% (19) | 37.5% (15) | 43.1% (25) | 26.5% (9) | 35.9% (23) | 35.3% (6) | |
| Prefer not to respond | 20.2% (56) | 25% (16) | 17.5% (7) | 12.1% (7) | 32.4% (11) | 18.8% (12) | 17.6% (3) | |
| Rural Residence | .957b | |||||||
| Yes | 49.5% (137) | 46.9% (30) | 55% (22) | 46.6% (27) | 52.9% (18) | 50% (32) | 47.1% (8) | |
| No | 50.5% (140) | 53.1% (34) | 45% (18) | 53.4% (31) | 47.1% (16) | 50% (32) | 52.9% (9) | |
| Currently Receiving Cancer Treatment | 66.4% (184) | 78.1% (50) | 77.5% (31) | 65.5% (38) | 73.5% (25) | 51.6% (33) | 41.2% (7) | .003b |
| # of treatment types | ||||||||
| Mean (SD) | 1.3 (0.52) | 1.3 (0.56) | 1.3 (0.60) | 1.1 (0.34) | 1.3 (0.56) | 1.1 (0.41) | 1.4 (0.79) | .168a |
| Range | 1-3 | 1-3 | 1-3 | 1-2 | 1-3 | 1-3 | ||
| Current Treatment Types* | ||||||||
| Chemotherapy | 49.5% (91) | 48.4% (31) | 40% (16) | 48.3% (28) | 29.4% (10) | 6.3% (4) | 11.8% (2) | <.001b |
| Radiation | 15.2% (28) | 6.3% (4) | 17.5% (7) | 6.9% (4) | 17.6% (6) | 7.8% (5) | 11.8% (2) | .239c |
| Immunotherapy | 33.2% (61) | 10.9% (7) | 15% (6) | 12.1% (7) | 35.3% (12) | 40.6% (26) | 17.6% (3) | <.001b |
| Hormone Therapy | 23.4% (43) | 35.9% (23) | 25% (10) | 5.2% (3) | 8.8% (3) | 1.6% (1) | 17.6% (3) | <.001b |
| Other | 2.8% (8) | 3.1% (2) | 5% (2) | 1.7% (1) | 5.9% (2) | 1.6% (1) | 0 | .732c |
Kruskal Wallis test
Chi-Square test
Fisher Exact Test
Health Behaviors
Data on respondents’ health behaviors and physical and psychosocial wellbeing are presented in Table 3. Overall, 66% of respondents had overweight or obesity; however, there were significant cancer group differences with only 38% of pulmonary MCS’ having overweight or obesity. PA levels across cancer groups were low, with a mere 14% meeting established guidelines (i.e., engaging in ≥150 min of moderate-to-vigorous PA per/week) and 26.7% reporting a total absence of physical activity. MCS meeting PA guidelines reported experiencing significantly better physical (48 vs 43; p=.003, d=.567) and mental (51 vs 47; p=.033, d=.404) health. Controlling for age, gender, race, time since diagnosis, treatment status, BMI, pain, and fatigue, meeting PA guidelines significantly predicted MCS physical (B=5.190; p<0.001) and mental (B=4.158; p=0.004) health. As for F&V intake, overall MCS reported consuming an average of 4 servings per day, with only 35% meeting the guidelines of ≥5 daily servings per day. While not statistically significant, MCS meeting dietary guidelines reported experiencing better physical (45 vs 43; p=.056, d=.244) and mental (48 vs 47; p=.549, d=.077) health. Alcohol (31%) and tobacco (10%) use were reported. Alcohol consumption averaged five drinks a week; however, heavier consumption (15-40 drinks a week) was reported (5%). While only 10% reported being current smokers, half of the respondents had a history of smoking, with pulmonary MCS reporting the highest incidence of smoking (20.6% current smokers; 79.4% ever smokers).
Table 3.
Health Behaviors and Physical and Psychosocial Wellbeing (N=277)
| Variables | All (N=277) % (n) |
Cancer Types | P value | |||||
|---|---|---|---|---|---|---|---|---|
| Female (n=64) % (n) |
Genitourinary (n=40) % (n) |
Gastrointestinal (n=58) % (n) |
Pulmonary (n=34) % (n) |
Melanoma (n=64) % (n) |
Other (n=17) % (n) |
|||
| Body Mass Index | ||||||||
| Mean (SD) | 27.8 (5.59) | 28.5 (6.21) | 28.9 (5.35) | 27.5 (5.16) | 24.5 (3.75) | 28.5 (5.58) | 27.8 (6.21) | .003a |
| Range | 14-50 | 14-50 | 20-40 | 19-47 | 17-36 | 21-50 | 19-38 | |
| Underweight <18.5 | 1 % (3) | 1.6% (1) | 0 | 0 | 5.9% (2) | 0 | 0 | |
| Normal Weight 18.5–24.9 | 33.2% (92) | 32.8% (21) | 22.5% (9) | 32.8% (19) | 55.9% (19) | 26.6% (17) | 41.2% (7) | |
| Overweight 25–29.9 | 36.5% (101) | 28.1% (18) | 35% (14) | 36.2% (21) | 35.3% (12) | 50% (32) | 23.5% (4) | |
| Class I Obese 30-34.9 | 19.1% (53) | 23.4% (15) | 32.5% (13) | 25.9% (15) | 0 | 10.9% (7) | 17.6% (3) | |
| Class II-III Obese >35 | 10.1% (28) | 14.1% (9) | 10% (4) | 5.2% (3) | 2.9% (1) | 12.5% (8) | 17.6% (3) | |
| % Overweight or Obese | 65.7% (182) | 65.6% (42) | 77.5% (31) | 67.2% (39) | 38.2% (13) | 73.4% (47) | 58.8% (10) | .007b |
| Smoking Status | ||||||||
| Current Smoker | 10.1% (28) | 7.8% (5) | 10% (4) | 5.2% (3) | 20.6% (7) | 10.9% (7) | 11.8% (2) | .293b |
| Ever Smoker | 50.5% (140) | 26.6% (17) | 62.5% (25) | 46.6% (27) | 79.4% (27) | 54.7% (35) | 52.9% (9) | <.001b |
| Never Smoker | 49.5% (137) | 73.4% (47) | 37.5% (15) | 53.4% (31) | 20.6% (7) | 45.3% (29) | 47.1% (8) | <.001b |
| Uses Alcohol | 31.4% (87) | 26.6% (17) | 22.5% (31) | 34.5% (20) | 35.3% (12) | 32.8 % (21) | 47.1 % (8) | .459b |
| # of drinks per week | ||||||||
| Mean (SD) | 4.8 (6.11) | 4.0 (6.01) | 2.6 (3.22) | 5.9 (8.65) | 3.7(3.73) | 5.2 (5.32) | 6.1 (6.52) | .262a |
| Range | 1-40 | 1-25 | 1-10 | 1-40 | 1-14 | 1-20 | 1-20 | |
| Fruit/Vegetable Intakee daily servings | ||||||||
| Mean (SD) | 4.1 (1.5) | 4.0 (1.57) | 4.1 (1.44) | 4.0 (1,65) | 4.2 (1.59) | 4.0 (1.46) | 4.7 (0.77) | .731a |
| Range | 0-7 | 0-7 | 0-7 | 0-7 | 1-7 | 1-7 | 4-6 | |
| Percent meeting dietary guidelines ≥5 daily servings | 35% (97) | 39.1% (25) | 27.5% (11) | 32.8% (19) | 41.2% (14) | 34.4% (22) | 35.3% (6) | .826b |
| Physical Activityf minutes per week | ||||||||
| Moderate to Vigorous (MVPA) | 41.9 (58.81) | 25.9 (46.15) | 36.7 (54.56) | 54.8 (65.59) | 30.6 (52.05) | 50.0 (61.20) | 62.9 (75.17) | .064a |
| Mean (SD) | 0-185 | 0-175 | 0-185 | 0-180 | 0-150 | 0-180 | 0-180 | |
| Range | ||||||||
| Mild | ||||||||
| Mean (SD) | 48.8 (54.48) | 46.3 (47.84) | 59.0 (65.68) | 50.9 (50.09) | 36.5 (43.81) | 53.1 (62.38) | 36.2 (51.04) | .725a |
| Range | 0-180 | 0-180 | 0-180 | 0-150 | 0-140 | 0-180 | 0-150 | |
| Percent meeting physical activity guidelines ≥150 min MVPA per week | 14.1% (39) | 6.3% (4) | 10% (4) | 20.7% (12) | 8.8% (3) | 17.2% (11) | 29.4% (5) | .063b |
| Percent with sedentary behavior 0 min PA per week | 26.7% (74) | 28.1% (18) | 32.5% (13) | 20.7% (12) | 26.5% (9) | 28.1% (18) | 23.5% (4) | .848b |
| Physical Healthg | ||||||||
| Mean (SD) | 43.6 (12.08) | 43.3 (9.12) | 42.6 (8.24) | 45.5 (8.77) | 42.5 (8.50) | 45.4 (8.64) | 46.1 (9.59) | .521a |
| Range | 17-68 | 20-68 | 24-58 | 29-68 | 25-58 | 26-62 | 34-68 | |
| Excellent: >58 | 3.2% (9) | 4.7% (3) | 0 | 3.4% (2) | 0 | 3.1% (2) | 11.8% (2) | |
| Very Good: 51-58 | 15.5% (43) | 10.9% (7) | 12.5% (5) | 12.1% (7) | 17.6% (6) | 25% (16) | 11.8% (2) | |
| Good: 42-50 | 37.9% (105) | 37.5% (24) | 50% (20) | 36.2% (21) | 35.3% (12) | 32.8% (21) | 41.2% (7) | |
| Fair: 35-41 | 28.5% (79) | 34.4% (22) | 17.5% (7) | 34.5% (20) | 29.4% (10) | 26.6% (17) | 17.6% (3) | |
| Poor: <35 | 14.8% (41) | 12.5% (8) | 20% (8) | 13.8% (8) | 17.6% (6) | 12.5% (8) | 17.6% (3) | |
| Mental Healthh | ||||||||
| Mean (SD) | 47.7 (9.30) | 48.2 (8.91) | 48.2 (9.39) | 42.7 (8.77) | 46.6 (8.61) | 49.3 (9.75) | 48.8 (11.38) | .241a |
| Range | 21-68 | 29-68 | 21-68 | 17-62 | 29-64 | 21-68 | 27-68 | |
| Excellent: >56 | 16.6% (46) | 17.2% (11) | 15% (6) | 10.3% (6) | 11.8% (4) | 23.4% (15) | 23.5% (4) | |
| Very Good: 49-56 | 26.0% (72) | 25% (16) | 37.5% (15) | 22.4% (13) | 26.5% (9) | 26.6% (17) | 11.8% (2) | |
| Good: 41-48 | 33.9% (94) | 35.9% (23) | 27.5% (11) | 36.2% (21) | 32.4% (11) | 31% (20) | 47,1% (8) | |
| Fair: 29-40 | 21.7% (60) | 20.3% (13) | 17.5% (7) | 29.3% (17) | 29.4% (10) | 17.2% (11) | 11.8% (2) | |
| Poor: <29 | 1.8% (5) | 1.6% (1) | 2.5% (1) | 1.7% (1) | 0 | 1.6% (1) | 5.9% (1) | |
| Overall Health | .381c | |||||||
| Excellent | 3.2% (9) | 3.1% (2) | 0 | 3.4% (2) | 2.9% (1) | 3.1% (2) | 11.8% (2) | |
| Very Good | 19.9% (55) | 18.8% (12) | 17.5% (7) | 17.2% (10) | 17.6% (6) | 26.6% (17) | 17.6% (3) | |
| Good | 42.6% (118) | 45.3%(29) | 52.5% (21) | 37.9% (22) | 29.4% (10) | 45.3% (29) | 41.2% (7) | |
| Fair | 26% (72) | 21.9% (14) | 22.5% (9) | 31% (10) | 32.4% (11) | 23.4% (15) | 29.4% (5) | |
| Poor | 8.3% (23) | 10.9% (7) | 7.5% (3) | 10.3% (6) | 17.6% (6) | 1.6% (1) | 0 | |
| Quality of Life | .703c | |||||||
| Excellent | 10.1% (28) | 7.8% (5) | 10% (4) | 6.9% (4) | 2.9% (1) | 17.2% (11) | 17.6% (3) | |
| Very Good | 26.4% (73) | 26.6% (17) | 27.5% (11) | 22.4% (13) | 23.5% (8) | 29.7% (19) | 29.4% (5) | |
| Good | 42.6% (118) | 45.3% (29) | 37.5% (15) | 50% (29) | 41.2% (14) | 39.1% (25) | 35.3% (6) | |
| Fair | 17.3% (48) | 18.8% (12) | 20% (8) | 15.5% (9) | 23.5% (8) | 12.5% (8) | 17.6% (3) | |
| Poor | 3.6% (10) | 1.6% (1) | 5% (2) | 5.2% (3) | 8.8% (3) | 1.6% (1) | 0 | |
| Pain | .713c | |||||||
| 10 (worst imaginable) | 0.4% (1) | 0 | 0 | 1.7% (1) | 0 | 0 | 0 | |
| 7-9 | 10.1% (28) | 9.4% (6) | 17.5% (7) | 6.9% (4) | 11.8% (4) | 9.4% (6) | 5.9% (1) | |
| 4-6 | 23.1% (64) | 21.9% (14) | 20% (8) | 31% (18) | 17.6% (6) | 21.9% (14) | 23.5% (4) | |
| 1-3 | 42.2% (117) | 45.3% (29) | 47.5% (19) | 43.1% (25) | 35.3% (12) | 37.5% (24) | 47.1% (8) | |
| 0 (none) | 24.2% (67) | 23.4% (15) | 15% (6) | 17.3% (10) | 35.3% (12) | 31.3% (20) | 23.5% (4) | |
| Fatigue | .564c | |||||||
| Very Severe | 10.8% (30) | 12.5% (8) | 15% (6) | 17.2% (10) | 5.9% (2) | 4.7% (3) | 5.9% (1) | |
| Severe | 29.6% (82) | 21.9% (14) | 25% (10) | 31% (18) | 38.2% (13) | 29.7% (19) | 47.1% (8) | |
| Moderate | 34.7% (96) | 34.4% (22) | 35% (14) | 32.8% (19) | 35.3% (12) | 37.5% (24) | 29.4% (5) | |
| Mild | 20.2% (56) | 21.9% (14) | 22.5% (9) | 13.8% (8) | 20.6% (7) | 25% (16) | 11.8% (2) | |
| None | 4.7% (13) | 9.4% (6) | 0 | 5.2% (3) | 0 | 3.1% (2) | 5.9% (1) | |
| Anxiety | ||||||||
| Mean (SD) | 49.3 (10.13) | 48.5 (10.12) | 49.6 (9.37) | 51.8 (11.19) | 49.8 (9.01) | 48.1 (9.59) | 47.1 (11.79) | .340a |
| Range | 37-79 | 37-72 | 37-79 | 37-76 | 37-66 | 37-72 | 37-72 | |
| Normal: <55 | 67.5% (187) | 71.9% (46) | 77.5% (31) | 53.4% (31) | 67.6% (23) | 70.3% (45) | 64.7% (11) | |
| Mild: 55-60 | 18.4% (51) | 15.6% (10) | 10% (31) | 25.9% (15) | 17.6% (6) | 18.8% (12) | 23.5% (4) | |
| Moderate: 61-70 | 11.6% (32) | 9.4% (6) | 10% (4) | 17.2% (10) | 14.7% (5) | 9.4% (6) | 5.9% (1) | |
| Severe: >70 | 2.5% (7) | 3.1% (2) | 2.5% (1) | 3.4% (2) | 0 | 1.6% (1) | 5.9% (1) | |
| Depression | ||||||||
| Mean (SD) | 48.2 (9.65) | 47.3 (9.37) | 47.7 (9.55) | 50.5 (10.69) | 49.4 (9.74) | 47.2 (8.60) | 46.0 (10.48) | .250a |
| Range | 37-81 | 37-81 | 37-74 | 37-81 | 37-73 | 37-69 | 37-70 | |
| Normal: <55 | 74.7% (207) | 81.3% (52) | 75% (30) | 60.3% (35) | 61.8% (21) | 85.9% (55) | 82.4% (14) | |
| Mild: 55-60 | 17.7% (49) | 14.1% (9) | 17.5% (7) | 24.1% (14) | 32.4% (11) | 10.9% (7) | 5.9% (1) | |
| Moderate: 61-70 | 5.8% (16) | 3.1% (2) | 5% (2) | 13.8% (8) | 2.9% (1) | 3.1% (2) | 5.9% (1) | |
| Severe: >70 | 1.8% (5) | 1.6% (1) | 2.5% (1) | 1.7% (1) | 2.9% (1) | 0 | 5.9% (1) | |
| Social Isolation | ||||||||
| Mean (SD) | 42.3 (9.08) | 42.6 (8.54) | 41.5 (9.15) | 44.1 (9.82) | 41.8 (9.79) | 41.4 (8.20) | 41.4 (10.24) | .576a |
| Range | 34-70 | 34-64 | 34-70 | 34-64 | 34-70 | 34-65 | 34-63 | |
| Normal: <55 | 86.6% (240) | 87.5% (56) | 90% (36) | 77.6% (45) | 88.2% (30) | 92.2% (59) | 82.4% (14) | |
| Mild: 55-60 | 8.3% (23) | 7.8% (5) | 7.5% (3) | 17.2% (10) | 5.9% (2) | 3.1% (2) | 5.9% (1) | |
| Moderate: 61-70 | 5.1% (14) | 4.7% (3) | 2.5% (1) | 5.2% (3) | 5.9% (2) | 4.7% (3) | 11.8% (2) | |
| Severe: >70 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | |
| Emotional Support | ||||||||
| Mean (SD) | 55.9 (8.47) | 55.5 (7.80) | 56.0 (9.12) | 55.4 (8.05) | 55.7 (9.06) | 56.5 (9.02) | 57.0 (8.37) | .846a |
| Range | 32-63 | 37-63 | 35-63 | 38-63 | 33-63 | 32-63 | 37-63 | |
| Very High: >70 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | |
| High: 61-70 | 45.5% (126) | 37.5% (24) | 50% (20) | 39.7% (23) | 44.1% (15) | 54.7% (35) | 52.9% (9) | |
| Average: 41-60 | 48.7% (135) | 59.4% (38) | 42.5% (17) | 56.9% (33) | 47.1% (16) | 37.5% (24) | 41.2% (7) | |
| Low: 30-40 | 5.8% (16) | 3.1% (2) | 7.5% (3) | 3.4% (2) | 8.8% (3) | 7.8% (5) | 5.9% (1) | |
| Very Low:<30 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | |
| Meaning and Purpose | ||||||||
| Mean (SD) | 55.5 (10.19) | 56.4 (10.28) | 55.1 (10.67) | 52.8 (10.20) | 54.9 (10.82) | 57.0 (9.25) | 57.9 (10.10) | .251a |
| Range | 29-68 | 32-68 | 29-68 | 31-68 | 32-68 | 35-68 | 39-68 | |
| Very High: >70 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | |
| High: 61-70 | 34.7% (96) | 35.9% (23) | 37.5% (15) | 22.4% (13) | 38.2% (13) | 37.5% (24) | 47.1% (8) | |
| Average: 41-60 | 54.2% (150) | 53.1% (34) | 52.5% (21) | 60.3% (35) | 50.0% (17) | 56.3% (36) | 41.2% (7) | |
| Low: 30-40 | 10.8% (30) | 10.9% (7) | 7.5% (3) | 17.2% (10) | 11.8% (4) | 6.3% (4) | 11.8% (2) | |
| Very Low:<30 | 0.4% (1) | 0 | 2.5% (1) | 0 | 0 | 0 | 0 | |
Kruskal Wallis test
Chi-Square test
Fisher Exact Test
Physical and Psychosocial Wellbeing
As for physical and psychosocial wellbeing, no significant differences were observed among the six cancer groups. Most reported some level of fatigue (95%) and pain (76%) in the past week. Ratings of “fair” to “poor” were seen for physical health (40%), mental health (23%), overall health (34%), and QOL (21%). Overall, mean scores for anxiety (M=49.3), depression (M=48.2), and social isolation (M=42.3) fell into the “normal” range. However, clinical symptoms (score ≥55) of anxiety (32%) and depression (25%) were observed. MCS’s feelings of meaning and purpose (M=55.5) and emotional support (M=55.9) were scored as “average.”
Supportive Care Use and Interest
Data on respondents’ supportive care use and interest are presented in Table 4. While 33.6 % reported ever using supportive care, only 12.3% reported current use. Yet, 57% reported interest in future programs. Greatest interest was seen for nutrition classes (45.6%), metastatic cancer support group (38%), and gardening (31%).
Table 4.
Supportive Care Use and Interest (N=277)
| Variables | All (N=277) % (n) |
Cancer Types | P value | |||||
|---|---|---|---|---|---|---|---|---|
| Female (n=64) % (n) |
Genitourinary (n=40) % (n) |
Gastrointestinal (n=58) % (n) |
Pulmonary (n=34) % (n) |
Melanoma (n=64) % (n) |
Other (n=17) % (n) |
|||
| Supportive Care Use | ||||||||
| Current | 12.3% (34) | 14.1% (9) | 7.5% (3) | 13.8% (8) | 14.7% (5) | 12.5% (8) | 5.9% (1) | .885c |
| Ever | 33.6% (93) | 42.2% (27) | 30.0% (12) | 34.5% (20) | 23.5% (8) | 34.4% (22) | 23.5% (4) | .453b |
| Future interest | 57.0% (158) | 68.8% (44) | 50.0% (20) | 63.8% (37) | 44.1% (15) | 50.0% (32) | 58.8% (10) | .105b |
| Future Supportive Care Programs of Interest* | ||||||||
| Nutrition classes | 45.6% (72) | 54.5% (24) | 30.0% (6) | 45.9% (17) | 53.3% (8) | 40.6% (13) | 40.0% (4) | .522b |
| Metastatic Cancer Support Group | 38.0% (60) | 43.2% (19) | 45.0% (9) | 32.4% (12) | 40.0% (6) | 28.1% (9) | 50.0% (5) | .644b |
| Gardening | 31.0% (49) | 31.8% (14) | 15.0% (3) | 37.8% (14) | 6.7% (1) | 43.8% (14) | 30.0% (3) | .081b |
| Cooking Classes | 25.9% (41) | 22.7% (10) | 25.0% (5) | 27.0% (10) | 26.7% (4) | 25.0% (8) | 40.0% (4) | .933b |
| Yoga | 20.9% (33) | 31.8% (14) | 15% (3) | 10.8% (4) | 26.7% (4) | 15.6% (5) | 30.0% (3) | .205c |
| Mediation | 19.0% (30) | 22.7% (10) | 10% (2) | 16.2% (6) | 13.3% (2) | 21.8% (7) | 3 (30.0%) | .714c |
| Art Therapy | 19.0% (30) | 22.7% (10) | 5% (1) | 21.6% (8) | 13.3% (2) | 15.3% (5) | 40.0% (4) | .258c |
| Journaling | 1.9% (3) | 2.3% (1) | 0 | 2.7% (1) | 0 | 0 | 10.0% (1) | .418c |
| Other | 16.5% (26) | 13.6% (6) | 20.0% (4) | 13.5% (5) | 33.3% (5) | 6.3% (2) | 40.0% (4) | .069c |
Kruskal Wallis test
Chi-Square test
Fisher Exact Test
Discussion
To the best of our knowledge, this study is the first assessment of health behaviors and wellbeing among a large and diverse group of MCS residing in Alabama. Our findings suggest a high prevalence of overweight/obesity and physical inactivity among these MCS. These findings which are consistent with data from the National Health Interview Survey among survivors of early stage cancers [25] and among the general Alabama population [9], add new knowledge about the state of health behaviors among Alabama MCS.
Based on evidence and best clinical practices, the American Cancer Society convened a group of experts in nutrition, physical activity, and cancer survivorship to create nutrition and physical activity guidelines for cancer survivors. These guidelines are intended to provide health care providers with the best possible information with which to help cancer survivors make informed choices about lifestyle habits, including diet and exercise [26]. In these guidelines, MCS are referred to the section ‘living with advanced cancer.’ However, this section is framed for individuals struggling with weight loss, diminished appetite, and signs and symptoms of malnutrition. In the current study, only 1% of MCS were underweight, with the majority (66%) having overweight or obesity. Obesity is an established risk factor for many malignancies and is associated with worse outcomes in several cancers [27]. However, BMI has also been associated with improved outcomes in some cancers [28], a phenomenon dubbed the “obesity paradox” [29]. While it is important to acknowledge that an MCS may currently have overweight or obesity and still be malnourished or may have experienced unintentional weight loss (conditions not captured by this survey), the high prevalence of overweight and obesity captured by this survey point to a need for more research in this area – research that could eventually lead to guidelines for weight management in this population.
The suboptimal intake of F&V’s among the MCS respondents to this survey parallels the suboptimal intakes of F&V’s in the general population of Alabamians, in which the Behavioral Risk Factor Survey has consistently shown low consumption [30]. Indeed, Alabama is a state in which the presence of both “food deserts” and “food swamps” are noteworthy – both of which are associated with low F&V consumption and high rates of obesity. Moreover, given that cancer care is costly and often leads to financial toxicity, the possibility of food insecurity within this population may further exacerbate the odds of lower F&V consumption [31], as well as obesity [32], among MCS.
Early evidence suggests that physical activity interventions are not only safe and low cost, but may improve physical and mental wellbeing among MCS [33-35]. Data from CanWalk, a 12-week community-based walking intervention among MCS, show that MCS who walked 30 minutes or more per day reported a higher QOL than those who walked less than 30 minutes per day [35]. Similarly, in the current study, MCS engaging in regular physical activity (≥150 min per week) reported experiencing significantly better physical and mental health. Given that MCS may have limited ability, activity preferences should be considered. In a survey among those with metastatic breast cancer, 53% reported a preference for a light intensity activity within their own environment, such as walking or gardening [36, 37]. Given that 26.7% of MCS in this study reported a complete absence of physical activity, encouraging light intensity activities may help reduce sedentary behavior. Moreover, increases in light intensity activity and reduction in sedentary time may ameliorate functional decline, improve QOL, and may even prolong survival [38, 39]. Gardening, a light intensity activity, may serve as an innovative approach to increase light intensity activity and support MCS. Data suggest that gardening may improve physical activity, vegetable consumption, body weight status, and QOL among early stage cancer survivors [40, 41]. Although findings among early stage cancer survivors cannot necessarily be extrapolated to MCS, it highlights the potential for gardening to enhance survivorship among MCS. Thirty-one percent of MCS in this study reported interest in gardening. Gardening is especially relevant in Alabama, with a climate that supports year round gardening.
As with all studies, this cross-sectional mailed survey had both strengths and limitations. Strengths included a fairly large sample, representation of multiple primary cancer types, and use of the universally relevant PROMIS® Measures [16]. The primary limitation of the current study relates to potential response bias since our response rate of 51% is at the low end of the limits purported by Dillman as acceptable [14]. This low response rate is likely due to the MCS population, a population apt to be sick and in which other survey studies have reported response rates of 25% - 44% [42, 43]. Therefore, this response rate was still higher than our anticipated 40% and still provided ample power for this exploratory study. Additionally, results may be further biased by lower survey response rates by survivors who are younger, African-American, and more sentinel to their diagnosis of metastatic disease. As for lower responses from younger and African-American MCS, the greater residential mobility among younger and non-white individuals [44] may have hindered our ability to successfully reach these groups via mail. As for lower responses from those more sentinel to their diagnosis, higher distress levels potentially may have been a factor. MCS more sentinel to their diagnosis tend to experience higher levels distress, due to uncertainty about the future; yet, overtime many adjust to this “new reality” [45]. Moreover, because of our overarching concern to make the survey as brief as possible to minimize burden, there were many domains, such as survivorship care planning and food insecurity that we were not able to include; thus, future studies will be needed to access these data. Finally, because MCS in this study were all from Alabama caution is warranted in generalizing results to those living in other areas of the U.S.
Conclusions
As treatment options for metastatic disease continue to expand and survivorship is prolonged, it is critical to identify modifiable behaviors to further optimize survivorship among MCS. Our findings suggest that engaging in regular PA and consuming more F&V may improve physical and mental health among those living with metastatic cancer. Future research may explore innovative approaches, such as gardening, which elicit high levels of interest, to aid MCS in improving these key health behaviors.
Funding:
The study was funded by a grant from the University of Alabama at Birmingham (UAB) Health Disparities Research Education Program Pilot Project Award (no assigned number; PI: J. Bail). Authors were supported by additional funding: Cancer Prevention and Control Training Program (T32-CA047888) (J. Bail), Cancer Research Experiences for Students (CaRES) Program (5R25CA076023) (J. Cagle), and Cancer Research Immersion Student Program (U54 CA118948) (K. Tiesi , J. Caffey).
Footnotes
Conflict of Interest/Competing Interests: The authors have no conflicts of interest to declare that are relevant to the content of this article. All authors certify that they have no affiliations with or involvement in any organization or entity with any financial interest or non-financial interest in the subject matter or materials discussed in this manuscript. The authors have no financial or proprietary interests in any material discussed in this article.
Availability of Data and Material: The data for this project are confidential, but may be obtained with a Data Use Agreement with the University of Alabama at Birmingham (UAB). Researchers interested in access to the data may contact the corresponding author.
Ethics Approval: Study protocol received approval from the University of Alabama at Birmingham (UAB) Institutional Review Board (IRB-300002317).
Consent to Participate: An IRB approved study information sheet was mailed along with the study survey (UAB IRB-300002317). Participant consent was implied through voluntary completion of the study survey.
Consent for Publication: An IRB approved study information sheet was mailed along with the study survey (UAB IRB-300002317). Participant consent was implied through voluntary completion of the study survey (UAB IRB-300002317).
Contributor Information
Jennifer R. Bail, College of Nursing, University of Alabama in Huntsville, NUR 419, 301 Sparkman Drive, Huntsville, AL, 35899.
Sumanth V. Bail, Clearview Cancer Institute.
Jessica Cagle, McWhorter School of Pharmacy, Samford University.
Koriann Tiesi, Department of Biology, University of Alabama at Birmingham.
Jayla Caffey, Department of Biology, Tuskegee University.
Marie Bakitas, School of Nursing, University of Alabama at Birmingham.
Wendy Demark-Wahnefried, University of Alabama at Birmingham.
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