Abstract
Objective
There are limited data on outcomes and predictors of health-related quality of life (HRQOL) of ovarian cancer survivors. Therefore, we examined the trajectory and predictors of HRQOL one- and two-years post-diagnosis in this population.
Methods
365 ovarian cancer survivors, a subset of participants in the longitudinal American Cancer Society’s Study of Cancer Survivors-I, completed questionnaires at one-year post-diagnosis on sociodemographics, clinical factors, and HRQOL (SF-36). 284 women had HRQOL data at two-years post-diagnosis. In this secondary data analysis, we examined HRQOL at both time points, changes in HRQOL and predictors of HRQOL with univariate and multivariate linear regression.
Results
Mean mental and physical HRQOL scores one-year post-diagnosis were 49.37 (SD±11.59) and 45.96 (SD±10.89), respectively. Older age, lower income, higher disease stage, more comorbidities and greater symptom burden were associated with poorer physical functioning one year post-diagnosis. Younger age, higher stage, having an existing mental health issue, greater symptom burden, and not receiving chemotherapy were associated with poorer mental functioning. Disease recurrence between one- and two-years post-diagnosis and greater symptom burden were predictors of declining physical functioning from one- to two-years post-diagnosis. Mental functioning did not change significantly between assessments.
Conclusions
Overall mental and physical functioning of these ovarian cancer survivors was similar to the general population. However, lower HRQOL was associated with a number of variables, including disease recurrence, treatment status, symptom burden, age, and number of comorbidities. These findings can help health care providers identify survivors who may benefit from relevant interventions.
Keywords: ovarian cancer, quality of life, survivors
INTRODUCTION
Ovarian cancer is the fifth leading cause of cancer death in US women and has the highest mortality rate of all gynecological cancers. An estimated 22,280 women will be diagnosed with ovarian cancer and 14,240 will die of this disease in 2016 [1]. Most cases of ovarian cancer are asymptomatic until the disease has progressed to an advanced stage, consequently, over 60% of women are diagnosed with metastatic disease. Despite this pattern of advanced stage presentation, the five-year survival rate has increased from 36% in 1975-1977 to 46% in 2005-2011 [1], thereby increasing the number of ovarian cancer survivors and heightening the importance of studying their post-treatment quality of life.
Health-related quality of life (HRQOL) is a multidimensional measure that is typically composed of an individual’s physical functioning, emotional, social and psychological well-being and health perceptions. HRQOL is used to help capture the extent that these factors are affected by an individual’s health and illness [2]. These patient-reported outcomes can provide clinicians with information regarding the impact of the cancer diagnosis and treatment. Patients at-risk for decreased HRQOL may require targeted supportive care and interventions [3].
In the past 15 years, over 20 studies have examined HRQOL of ovarian cancer survivors utilizing various instruments. The majority of the studies either had small sample sizes [4-14] or evaluated mixed samples of gynecologic cancer survivors [7, 15-23]. Most of the existing studies described HRQOL of long-term ovarian cancer survivors at least five years post-diagnosis [6, 9-11, 15-17, 20, 24-26] or solely examined HRQOL of women undergoing active treatment [5, 7, 13, 19, 27, 28]. There are limited data on HRQOL among short-term ovarian cancer survivors (one-to-two years post-diagnosis), with a handful of small studies that assessed HRQOL longitudinally including assessments one-year post-diagnosis [4, 13, 14, 18, 23, 29]. Therefore, our study focuses on the time period of one- to two- years post-diagnosis in a large sample of solely ovarian cancer survivors which will increase our understanding of how these women adjust to life following diagnosis and first line treatment. Challenges during this time include managing persistent side effects of treatment, coping with fears of disease recurrence, adopting new family and social roles, and making meaning of the cancer experience. Despite these issues, relatively little is known about this period of time.
Given the lack of research on HRQOL among short-term ovarian cancers survivors, our study may help inform clinicians about factors that women experience during this period that may impact their HRQOL. Our aim was to determine the patterns and predictors of HRQOL among ovarian cancer survivors enrolled in the American Cancer Society (ACS) Study of Cancer Survivors-I (SCS-I) one-year post-diagnosis. Using one of the largest samples of ovarian cancer survivors to date and unique longitudinal data, we evaluated changes in HRQOL from one- to two-years post-diagnosis and identified factors associated with significant changes. We hypothesized that women one-year post-diagnosis would have lower HRQOL than that of the general population, that there would be improvements in HRQOL from one- to two- years post-diagnosis, and that factors such as disease stage, symptom burden, and age would be associated with changes in HRQOL. Identifying risk factors associated with poor HRQOL could be useful in targeting supportive care and aid in planning interventions with this population.
METHODS
Study Population
Our population of ovarian cancer survivors was drawn from the longitudinal SCS-I, which identified and surveyed cancer survivors of the ten most commonly diagnosed cancers in the US (prostate, breast, lung, colorectal, bladder, skin, kidney, ovarian, uterine and non-Hodgkin lymphoma) from cancer registries in 11 states; sampling and study design details have been previously described [30]. Briefly, participants were recruited between July 12, 2000 and November 9, 2005 at approximately one-year post-diagnosis and completed the baseline survey at this time. Survivors were surveyed a second time one year later and asked to complete the follow-up questionnaire. Eligibility criteria were: 1) diagnosis of one of the ten cancers of interest; 2) ≥18 years of age at time of diagnosis; 3) resident of the state from which they were sampled at the time of diagnosis; 4) diagnosed with a local, regional, or distant Surveillance, Epidemiology, and End Results Program (SEER) summary stage cancer; and 5) able to communicate in English or Spanish.
A total of 6,305 of the 18,558 survivors contacted were enrolled in SCS-I (34% response rate). Detailed information regarding recruitment, response rates, and patterns of non-response is provided elsewhere [30]. Among all the cancer types, ovarian cancer survivors (n=395) had the highest response rate (44.1%) [30]. Overall ethics approval for the study was obtained from the Institutional Review Board (IRB) of Emory University. Additional IRB approvals were obtained from each state’s cancer registry, including the Connecticut Department of Public Health Human Investigation Committee and the individual hospital IRBs in Connecticut. Data used in this secondary data analysis were obtained from the state cancer registries and from surveys completed by the study participants approximately one-year and two-years post-diagnosis.
Measurement
Demographic and Medical information
Clinical characteristics, such as cancer stage and date of diagnosis, were obtained from the state cancer registries. Nearly all participants completed self-administered mailed questionnaires, with a small fraction completing surveys over the phone. The questionnaires asked about physical, social, physiological and spiritual functioning, and also collected information on basic demographics, cancer diagnosis and treatment, comorbid conditions (e.g. Alzheimer’s disease, arthritis, diabetes, high blood pressure and osteoporosis), mental health conditions (e.g. anxiety, depression), and access to healthcare and insurance [30].
Symptoms and Comorbid Conditions
The Modified Rotterdam Symptom Checklist (RSCL-M) was used to assess the burden caused by the presence of 30 physical symptoms during the past week on a four-point Likert Scale [31]. RSCL-M scores are a summation of the 30 items and range from 30 to 120, with higher scores indicating greater burden or impairment.
Information on comorbid conditions was self-reported via the mailed questionnaires using the question “Are you currently being treated for any medical conditions other than cancer?” The participants were asked to complete a checklist of sixteen conditions and additionally were able to write-in conditions not included in the list. This list included three mental health related conditions: “anxiety,” “depression” and “mental health problems (other than depression)”.
HRQOL
Our primary outcome of HRQOL was based on responses to Medical Outcomes Survey-Short Form-36 (SF-36) Health Survey Version 1. The survey consists of 36 questions with varying response options. Scores were calculated for the eight subscales (mental health, social, vitality, role-emotional, physical functioning, bodily pain, role-physical, and general), as well as for the physical component summary (PCS) score and the mental component summary (MCS) score [32]. All scores were normalized to the 1998 general US population, with a range of 0-100, mean of 50 and standard deviation (SD) of 10; a higher score denotes better HRQOL [32].
Statistical Analysis
Our analytic sample includes the 365 ovarian cancer survivors with complete SF-36 data at baseline (one-year post-diagnosis), 30 of the 395 women with ovarian cancer enrolled to the study had incomplete SF-36 data and were excluded from the analysis. Two-years post-diagnosis data were available for 310 of the 395 women enrolled; reasons for not completing the follow-up survey were refusal/non-response/unable to locate (n=51) and death (n=34). Of the 310 women with complete SF-36 data in our baseline data, 284 had complete SF-36 data at two-years post-diagnosis and were evaluated in the change analysis from one- to two-years post-diagnosis.
SF-36 subscales and component summary scores were computed for one-year and two-years post-diagnosis. Changes in PCS and MCS between these two time points were calculated and evaluated with paired t-tests. Potential predictors of HRQOL at one-year post-diagnosis based on the PCS and the MCS were examined using univariate linear regression (N=365). The predictors that were found to be statistically significant at the P≤0.05 level in the univariate models were then tested in multivariate linear regression models using stepwise selection. Mean PCS and MCS values and beta coefficient estimates are calculated for categorical and continuous variables, respectively.
Additionally, among participants with SF-36 data at both time points (N=284), we evaluated predictors of statistically significant changes in component summary scores from one-year to two-years post-diagnosis in univariate and multivariate linear regression models. Significant univariate predictors at the P≤0.05 level were tested in a backward stepwise multivariate linear regression model. All analyses were conducted using SAS, Version 9.3 (SAS, Cary, NC).
RESULTS
Baseline Demographics
At study enrollment, the 365 ovarian cancer survivors had a mean age of 56.9 years and on average were 1.3 years post-diagnosis. Over half of the women were diagnosed with distant ovarian cancer (52%) and almost all the women reported receiving surgery (94%) and chemotherapy (90%). The majority of the sample was non-Hispanic white (90%), well educated (having some college or graduate school education) (59%), and married or living as married (64%). Almost all of the women had health insurance (98%) and almost half had a household income of $40,000 or more (49%). While more than half of the women reported having no comorbid conditions (57%), 24% reported having one comorbid condition and 19% had two or more comorbid conditions.
HRQOL at Baseline
At baseline, the mean normalized SF-36 MCS and PCS were 49.4 (SD=11.59) and 46.0 (SD=10.89), respectively (Table 1). Older age at diagnosis, lower household income, higher cancer stage, more comorbid conditions and greater symptom burden were significant independent predictors of poorer physical functioning at one-year post-diagnosis (lower PCS score) (Table 2). After multivariate adjustment, the following characteristics were predictors of poorer mental functioning at one-year post-diagnosis (lower MCS score): younger age at diagnosis, lower cancer stage, no chemotherapy treatment, existing mental health conditions, and greater symptom burden (Table 2). In a sensitivity analysis of predictors of the component summary scores at one-year post-diagnosis, among the 284 women who completed questionnaires at both one- and two-years post-diagnosis, the same characteristics were associated with PCS and MCS as in the full baseline sample (results not shown).
Table 1.
SF-36 Scores at 1 year post-diagnosis, 2 years post-diagnosis and change in SF-36 scores from 1 to 2 years post-diagnosis of ovarian cancer survivors in the ACS Study of Cancer Survivors-I
| Baseline Sample | Change Analysis Sample | |||
|---|---|---|---|---|
| 1 year post-diagnosis SF-36 Scores Mean (± SD) N=365 | 1 year post-diagnosis SF-36 Scores Mean (± SD) N=284 | 2 years post-diagnosis SF-36 Scores Mean (± SD) N=284 | Change in SF-36 Scores Mean (± SD) N=284 | |
| SF-36 Summary Scores | ||||
| Mental Component | 49.37 (11.59) | 50.23 (10.83) | 49.77 (10.93) | - 0.46 (8.30) |
| Physical Component | 45.96 (10.89) | 46.91 (10.45) | 45.56 (11.04) | -1.35 (9.04)a |
| SF-36 Subscales | ||||
| Mental Health | 49.53 (10.40) | 50.01 (9.96) | 50.11 (9.97) | 0.09 (7.36) |
| Social | 48.21 (10.55) | 49.34 (9.73) | 48.29 (10.28) | -1.05 (9.08) |
| Vitality | 48.60 (11.15) | 49.75 (10.78) | 48.98 (11.12) | -0.77 (7.98) |
| Roles (emotional) | 46.47 (12.51) | 47.68 (11.70) | 46.51(12.44) | -1.17 (11.00) |
| Physical | 44.82 (10.81) | 46.05 (10.15) | 45.26 (10.43) | -0.80 (8.09) |
| Bodily Pain | 50.21 (10.54) | 50.78 (10.52) | 49.54 (10.81) | -1.25 (9.77)a |
| Roles (physical) | 44.09 (11.87) | 45.01 (11.72) | 43.97 (12.27) | -1.05 (11.33) |
| General | 47.65 (9.78) | 48.58 (9.60) | 46.83 (10.78) | -1.75 (7.30)b |
Abbreviations: ACS: American Cancer Society; SD, Standard Deviation
Change significantly different from 0 (T-test, P<0.05)
Change significantly different from 0 (T-test, P<0.0001)
Table 2.
Unadjusted and adjusted associations between demographic and clinical characteristics and SF-36 PCS and MCS at 1 year post-
| SF-36 Physical Component Summary Score
|
SF-36 Mental Component Summary Score
|
||||||||
|---|---|---|---|---|---|---|---|---|---|
| Variable | Na | Univariate Mean/β-estimate ± SE | P-value/P for trend | Multivariate Mean/β-estimate ± SE | P-value/P for trend | Univariate Mean/β-estimate ± SE | P-value/P for trend | Multivariate Mean/β-estimate ± SE | P-value/P for trend |
| Age at Diagnosis | <0.0001 | 0.0126 | <0.0001 | <0.0001 | |||||
| Less than 55 years | 186 | 48.77 ± 0.77 | 46.40 ± 0.81 | 45.81 ± 0.81 | 39.47 ± 1.18 | ||||
| 55 years or greater | 179 | 43.05 ± 0.79 | 43.71 ± 0.80 | 53.07 ± 0.82 | 45.84 ± 1.32 | ||||
| Time Since Diagnosis, months | 365 | 0.098 ± 0.14b | 0.4971 | - | -0.15 ± 0.15b | 0.3368 | - | ||
| Race/Ethnicity | 0.0153 | 0.3290 | |||||||
| Non-Hispanic White | 330 | 46.41 ±0.60 | - | 49.17 ± 0.64 | - | ||||
| Other | 35 | 41.73 ±1.83 | - | 51.19 ± 1.96 | - | ||||
| Education | 0.0009 | 0.9338 | |||||||
| Some High School (Grade 9-12) | 32 | 41.45 ±1.90 | - | 48.36 ± 2.04 | - | ||||
| High School Diploma or GED | 111 | 44.64 ±1.02 | - | 51.17 ± 1.09 | - | ||||
| Vocational School or Some College | 153 | 46.66 ±0.87 | - | 48.44 ± 0.93 | - | ||||
| Professional or Graduate School Experience | 64 | 48.73 ± 1.34 | - | 49.48 ± 1.44 | - | ||||
| Marital Status | 0.0034 | 0.6534 | |||||||
| Married or Living as Married | 235 | 47.21 ± 0.70 | - | 49.22 ± 0.75 | - | ||||
| Single/Divorced/Separated or Widowed | 129 | 43.73 ± 0.95 | - | 49.79 ± 1.02 | - | ||||
| Health Insurance | 0.9715 | 0.1024 | |||||||
| Have Insurance | 356 | 46.00 ± 0.58 | - | 49.45 ± 0.61 | - | ||||
| Do not have Insurance | 7 | 46.15 ± 4.11 | - | 42.22 ± 4.37 | - | ||||
| Household Income | <0.0001 | 0.9656 | |||||||
| $19,999 or Less | 48 | 40.71 ± 1.52 | 43.11 ± 1.32 | 0.0031 | 48.65 ± 1.70 | - | |||
| $20,000-$39,999 | 84 | 43.41 ± 1.15 | 44.09 ± 0.98 | 49.44 ± 1.28 | - | ||||
| $40,000-$74,999 | 104 | 45.88 ± 1.03 | 45.11 ± 0.93 | 48.34 ± 1.15 | - | ||||
| $75,000 or More | 75 | 50.55 ± 1.21 | 47.91 ± 1.07 | 49.12 ± 1.36 | - | ||||
| Employment Status | |||||||||
| Paid Employment | 172 | 49.83 ± 0.77 | - | 48.80 ± 0.88 | - | ||||
| No Paid Employment | 21 | 49.59 ± 2.18 | 0.9157c | - | 45.07 ± 2.52 | 0.1647c | - | ||
| On leave or Unemployed because of Disability | 34 | 36.53 ± 1.71 | <0.0001c | - | 46.10 ±1.98 | 0.2158c | - | ||
| Retired or Homemaker | 114 | 43.07 ± 0.93 | <0.0001c | - | 51.92 ± 1.08 | 0.0262c | - | ||
| Cancer Stage (SEER Stage) | <0.0001 | 0.0038 | 0.0230 | 0.0324 | |||||
| Localized | 100 | 49.95 ± 1.05 | 46.51 ± 0.99 | 46.49 ± 1.15 | 40.26 ± 1.37 | ||||
| Regional | 73 | 47.53 ± 1.23 | 45.84 ± 1.14 | 51.83 ± 1.34 | 44.63 ± 1.54 | ||||
| Distant | 184 | 42.99 ± 0.78 | 42.82 ± 0.76 | 49.76 ± 0.85 | 43.08 ± 1.23 | ||||
| Initial Chemotherapy | 0.0075 | 0.0005 | 0.0012 | ||||||
| Did not receive Chemotherapy | 27 | 51.42 ± 2.09 | - | 42.13 ± 2.19 | 39.37 ± 1.96 | ||||
| Received Chemotherapy | 330 | 45.57 ± 0.60 | - | 50.13 ± 0.63 | 45.94 ± 0.86 | ||||
| Initial Radiation | 0.0718 | 0.1727 | |||||||
| Did not receive Radiation | 282 | 46.55 ± 0.65 | - | 49.10 ± 0.69 | |||||
| Received Radiation | 75 | 43.98 ± 1.26 | - | 51.15 ± 1.33 | |||||
| Comorbid Conditions | <0.0001 | 0.0002 | 0.4838 | ||||||
| None | 208 | 48.74 ± 0.71 | 47.36 ± 0.74 | 49.60 ± 0.81 | |||||
| One | 88 | 44.90 ± 1.09 | 45.71 ± 1.02 | 49.41 ± 1.24 | |||||
| Two or more | 68 | 38.74 ± 1.24 | 42.10 ± 1.18 | 48.46 ± 1.41 | |||||
| Mental Health Conditions | 0.4702 | <0.0001 | <0.0001 | ||||||
| Depression/Anxiety/Other Mental Health Issue | 44 | 44.93 ± 1.64 | - | 37.97 ±1.63 | 37.31 ± 1.65 | ||||
| None | 317 | 46.20 ± 0.61 | - | 51.04 ±0.61 | 48.00 ± 1.05 | ||||
| RSCL-M Score | <0.0001 | <0.0001 | <0.0001 | <0.0001 | |||||
| 30 ≤ Score ≤ 37 | 92 | 54.90 ± 0.93 | 52.15 ± 1.12 | 54.85 ± 1.15 | 48.91 ± 1.38 | ||||
| 37 < Score ≤ 43 | 85 | 48.10 ± 0.97 | 46.78 ± 1.05 | 50.64 ± 1.20 | 44.07 ± 1.48 | ||||
| 43 < Score ≤ 51 | 92 | 43.48 ± 0.93 | 43.65 ± 1.04 | 47.46 ± 1.15 | 40.04 ± 1.43 | ||||
| 51 < Score ≤ 88 | 80 | 37.30 ± 1.00 | 37.64 ± 1.04 | 43.91 ± 1.23 | 37.59 ± 1.50 | ||||
Abbreviations: SE: Standard Error, RSCL-M: Modified Rotterdam Symptom Checklist
May not sum to 365 due to missing covariate data
β estimate for time from diagnosis to completion of the baseline survey (approximately 1-year post-diagnosis
P-value for the category compared to Paid employment
Change in HRQOL
Among the 284 participants who had complete SF-36 data for both one-year and two-years post-diagnosis, there was a significant decline in the PCS (1.4 decrease; SD=9.0; P<0.05), with significant declines in two of the component PCS subscale scores namely, bodily pain (1.3 point decrease; SD=9.8; P<0.05) and general health (1.8 decrease; SD=7.3; P<0.0001) (Table 1). No change was observed in the SF-36 MCS or any of the subscale scores that contribute the SF-36 MCS (Table 1).
SF-36 scores in this study were normalized to the 1998 general US population, with a range of 0-100, mean of 50 and SD of 10. According to Cohen’s criteria regarding effect size indexes in research, for the SF-36 scores a small change is 0.2 SD (2 points) and a moderate change is 0.5 SD (5 points) [33]. Using this definition, among ovarian cancer survivors with complete SF-36 data at two years post-diagnosis, 17.3% had a moderate increase and 25.4% had a moderate decrease in PSC score between one- and two-years post-diagnosis.
Since we observed a statistically significantly change in physical functioning from one-to two-years post-diagnosis we evaluated predictors of change in PCS (see Table 3). In the multivariate model, only disease recurrence between one- and two-years post-diagnosis (P=0.0003), symptom burden at one year post-diagnosis (P<0.0001), and change in symptom burden (P<0.0001) were associated with changes in physical functioning over the one year time period
Table 3.
Unadjusted and adjusted correlations between demographic and clinical characteristics and Change in SF-36 Physical Component Summary scores from 1 year to 2 years post-diagnosis (N=284)
| Change in SF-36 Physical Component Summary Score
|
||||||
|---|---|---|---|---|---|---|
| Variable | Na | Univariate Mean/β-estimate, ± SE | P-value/P for trend | Multivariateb Mean/β-estimate ± SE | P-value/P for trend | |
| Age at Diagnosis | 0.3090 | |||||
| Less than 55 years | 150 | -1.86 ± 0.74 | - | |||
| 55 years or greater | 134 | -0.77 ± 0.78 | - | |||
| Race/Ethnicity | 0.0701 | |||||
| Non-Hispanic White | 261 | -1.64 ±0.56 | - | |||
| Other | 23 | 1.93 ±1.88 | - | |||
| Education | 0.9406 | |||||
| Some High School (Grade9-12) | 20 | -1.71 ± 2.04 | - | |||
| High School Diploma or GED | 86 | -0.65 ± 0.98 | - | |||
| Vocational School or Some College | 119 | -1.84 ± 0.84 | - | |||
| Professional or Graduate School Experience | 55 | -1.14 ± 1.23 | - | |||
| Marital Status | 0.0014 | |||||
| Married or Living as Married | 191 | -2.55 ± 0.65 | - | |||
| Single/Divorced/Separated or Widowed | 92 | 1.10 ± 0.93 | - | |||
| Health Insurance | 0.8965 | |||||
| Have Insurance | 276 | -1.43 ± 0.54 | - | |||
| Do not have Insurance | 6 | -1.92 ± 3.68 | - | |||
| Household Income | 0.0843 | |||||
| $19,999 or Less | 31 | 1.33 ±1.67 | - | |||
| $20,000-$39,999 | 65 | -1.27 ±1.15 | - | |||
| $40,000-$74,999 | 81 | -1.77 ±1.03 | - | |||
| $75,000 or More | 63 | -2.15 ±1.17 | - | |||
| Employment Status | ||||||
| Paid Employment | 143 | -0.85 ±0.74 | - | |||
| No Paid Employment | 19 | -4.91 ±2.03 | 0.0619c | - | ||
| On leave or Unemployed because of Disability | 25 | 0.56 ±1.78 | 0.4618c | - | ||
| Retired or Homemaker | 82 | -1.46 ±0.98 | 0.6197c | - | ||
| Cancer Stage (SEER Stage) | 0.4172 | |||||
| Localized | 84 | -0.93 ± 1.00 | - | |||
| Regional | 62 | -0.83 ± 1.16 | - | |||
| Distant | 131 | -1.97 ± 0.80 | - | |||
| Disease Recurrence between 1 and 2 years post-diagnosis | <0.0001 | 0.0003 | ||||
| Recurred | 74 | -6.19 ± 1.04 | -4.33 ± 0.86 | |||
| Did not recur | 167 | 0.50 ± 0.68 | -0.46 ± 0.57 | |||
| Received chemotherapy between diagnosis and 1 year post-diagnosis | 0.9944 | |||||
| Did not receive | 18 | -1.42 ± 2.14 | - | |||
| Received | 260 | -1.40 ± 0.56 | - | |||
| Received radiation between diagnosis and 1 year post-diagnosis | 0.5773 | |||||
| Did not receive | 220 | -1.56 ± 0.61 | - | |||
| Received | 58 | -0.81 ± 1.19 | - | |||
| Received treatment between 1 to 2 years post-diagnosis | <0.0001 | |||||
| Did not receive | 166 | 0.66 ± 0.68 | - | |||
| Received | 118 | -4.17 ± 0.81 | - | |||
| Comorbid Conditions | 0.0911 | |||||
| None | 169 | -1.55 ± 0.69 | - | |||
| One | 66 | -2.53 ± 1.11 | - | |||
| Two or more | 48 | 0.95 ± 1.30 | - | |||
| Change in Comorbid conditions from 1 to 2 years post-diagnosis | 283 | -0.44 ± 0.76d | 0.5620 | - | ||
| Mental Health Conditions | 0.4758 | |||||
| Depression/Anxiety/Other Mental Health Issue | 25 | -2.58 ± 1.81 | - | |||
| None | 258 | -1.22 ± 0.56 | - | |||
| RSCL-M at 1 year Post-Diagnosis | 0.0062 | <0.0001 | ||||
| 30 ≤ Score ≤ 37 | 81 | -2.97 ±0.99 | 0.27 ± 0.99 | |||
| 37 < Score ≤ 43 | 66 | -1.71 ±1.10 | -0.85 ± 0.96 | |||
| 43 < Score ≤ 51 | 74 | -1.22 ±1.04 | -4.26 ± 0.91 | |||
| 51 < Score ≤ 88 | 54 | 1.41 ±1.21 | -4.77 ± 1.20 | |||
| Change in RSCL-M from 1 to 2 years post-diagnosis | 275 | -0.55 ±0.06e | <0.0001 | -0.54 ± 0.06d | <0.0001 | |
Abbreviations: RSCL-M, Modified Rotterdam Symptom Checklist; SE, Standard Error
May not sum to 284 due to missing covariate data
Multivariate model includes: recurrence between 1 to 2 years post-diagnosis, RSCL-M at 1 year post-diagnosis, change in RSCL-M between 1 to 2 years post-diagnosis and SF-36 physical component score at 1 year post-diagnosis
P-value for the category compared to Paid employment
β Estimate for change in number of comorbid conditions reported from 1 to 2 years post-diagnosis
β Estimate for change in symptom burden from 1 to 2 years post-diagnosis
DISCUSSION
Our study examined HRQOL of ovarian cancer survivors one year after diagnosis, as well as changes from one- to two-years post-diagnosis. At one-year post-diagnosis, these ovarian cancer survivors had average normalized SF-36 scores similar to the general US population. Younger age at diagnosis, lower cancer stage, no chemotherapy treatment, existing mental health conditions and greater symptom burden predicted poorer mental functioning at one-year after diagnosis. Older age at diagnosis, lower household income, higher cancer stage, greater number of comorbid conditions and greater symptom burden predicted poorer physical functioning. We also observed a small, but statistically significant overall decline in physical functioning among these women from one- to two-years post-diagnosis. Disease recurrence between one- and two-years post-diagnosis, greater symptom burden at baseline, and an increase in symptom burden between one- and two-years post-diagnosis were associated with declines in physical functioning.
Given that ovarian cancer is often diagnosed at an advanced stage and entails aggressive treatment options, these survivors can experience high levels of distress, which may negatively impact their HRQOL [5, 34]. However, the ovarian cancer survivors in our study had mean MCS and PCS scores similar to age- and gender-matched general populations. Specifically, the MCS at one-year post-diagnosis for our study sample is comparable to the mean norm scores of 50.3 (SD=10.1) and 52.0 (SD=9.7) for general US population females ages 55-64 years and ≥65 years, respectively. The mean PCS in our sample is between the mean norm values for women ages 55-64 years 46.9 (SD=11.2) and ≥65 years 41.3 (SD=11.4) [32]. Several other studies of ovarian and other gynecologic cancer survivors have also noted comparatively good HRQOL. Three existing studies used the SF-36 as a measure of HRQOL among ovarian cancer survivors. Two of the studies surveyed women before their oncologic surgery and found the PCS and MCS to be comparable to that of the general population [5, 7]. The third study did not publish the sample’s mean component summary scores, however, the authors stated that their sample of early stage ovarian cancer survivors who were at least five years post-diagnosis had good HRQOL that was comparable to other cancer survivors [10].
Results from studies examining HRQOL in breast cancer survivors appear to have similar findings [35]. In fact, the mental HRQOL in our study was better than the mean MCS scores of breast cancer survivors who were on average seven years post-diagnosis. The PCS values for the breast cancer survivors that had received chemotherapy were similar to the ovarian cancer survivors in our study, while breast cancer survivors who received hormonal therapy only or no systemic therapy had higher PCS than our study population [35].
Three other studies evaluated HRQOL of ovarian cancer survivors approximately one- year post-diagnosis, with scales other than the SF-36 [18, 22, 29]. These scales encompassed domains similar to the SF-36 by using physical, functional, emotional, and social subscales, two studies used the Functional Assessment of Cancer Therapy (FACT) measures, while the third reported scores from the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire–Core 30 (EORTC QLQ-C30). These measures are specific to cancer populations and do not allow for comparisons to be made to the general US population.
Several other studies have examined demographic and clinical variables in relation to HRQOL in ovarian cancer survivors, with the majority using either the Functional Assessment of Cancer Treatment – Ovarian (FACT-O) or the EORTC QLQ-C30 [6, 7, 10, 11, 16, 18, 20-22, 26]. Similar to our study, older age at diagnosis was found to be associated with poorer functional well-being [18, 20], but better emotional well-being [20].
Older survivors may take longer to recover from surgery and chemotherapy and are perhaps unable to return to pre-diagnosis physical functioning levels. Younger survivors may be better able to physically deal with the diagnosis and treatment, but we found had lower mental HRQOL than their older counterparts. It is possible that younger survivors have what can be perceived as greater responsibilities outside of their cancer diagnosis. Younger women are more likely to have young children and the need to return to work that may produce greater mental burden compared to older survivors who are less likely to be caregivers of young children and may have already retired.
Disease stage and symptom burden were associated with HRQOL in our study [10]. Similarly, in two other studies the existence of symptoms, including fatigue, was also associated with lower HRQOL [10, 11]. A large body of evidence suggests that receiving chemotherapy treatment is associated with poorer physical HRQOL compared to those who do not receive chemotherapy treatment [5, 19, 36, 37]. Given that many of the ovarian cancer survivors were diagnosed with late stage disease, it is conceivable that at one-year after diagnosis, these women were still undergoing active treatment and were experiencing treatment related symptoms that adversely affected their HRQOL. Many chemotherapies cause toxicities (i.e. symptoms) that can diminish physical HRQOL in cancer survivors and the results from our study demonstrated that symptom burden and having comorbid conditions adversely affected ovarian cancer survivors a year after diagnosis.. Having an existing mental health condition was associated with lower MCS in our population. However, somewhat surprisingly, our study found that not having chemotherapy treatment was associated with poorer mental HRQOL. Only a small proportion of women reported not having chemotherapy (7.6%) and we have no knowledge of the reason for this treatment decision. Treatment information was collected using self-report and not through medical record abstraction, so it is also possible that there is some misclassification.
In our study sample, on average, physical functioning (SF-36 PCS) decreased significantly between one- and two- years post-diagnosis, while the average MCS score remained constant. A handful of small studies have longitudinal HRQOL data; two studies enrolled women with different gynecologic cancers [18, 22] and three solely included ovarian cancer survivors [4, 5, 14]. The exact timing of the HRQOL assessments varied for each study but most of the studies obtained HRQOL measures before treatment and conducted an assessment around one-year post-diagnosis [5, 18, 22]. One study included assessments at one- and two-years post-operatively, and in contrast to our study found no change in physical and functional well-being as assessed by the FACT-O. This may be due to the difference in measures used to assess quality of life [14]. As noted earlier, we were unable to compute SF-36 change scores who did not respond to the two-year post diagnosis follow up. Results indicated that these women had significantly lower MCS and PCS scores at the one-year post diagnosis time point, so it is possible that a healthy responder bias may have contributed to a smaller change in PCS and MCS between our two study time points.
The collective results of our study may aid in the identification of sub-groups of ovarian cancer survivors who may benefit from interventions to improve HRQOL. In addition, our findings support the recent mandate from the American College of Surgeons Commission for psychosocial distress screening to be a new patient care standard [38]. Women with higher symptom burden or existing mental health conditions have particularly low mental HRQOL and could benefit from screening for high emotional distress at diagnosis and during treatment. If women who are at risk for on-going mental health problems are identified early (i.e. at diagnosis or treatment) through distress screening, we may be able to stabilize or improve their mental HRQOL through their treatment and during follow-up via an already tested and efficacious nursing intervention targeting symptoms and mental health [3, 39]. Similarly, ovarian cancer survivors identified as being at risk for declining physical functioning, could receive an exercise/walking intervention which our group has recently reported increases HRQOL [40].
Our study was a population-based nationwide survey and provides longitudinal data for US ovarian cancer survivors from a wide geographic area and socioeconomic range. To our knowledge this is the largest study to examine predictors of HRQOL and change in HRQOL in ovarian cancer survivors over time. In spite of these strengths, our study has several potential limitations, including the low response rate. Our results may not be generalizable to all ovarian cancer survivors, as the survivors who enrolled in this study may have been generally healthier, including in relation to HRQOL, than those who did not participate, and 90% of the participants were non-Hispanic white and 98% had health insurance. In this study, follow-up is limited to two time points and we are therefore not able to examine varying patterns in HRQOL over time. Thus, subsequent studies with longer and more frequent follow-ups are warranted. Furthermore, although we evaluated an extensive set of characteristics as potential predictors, other variables that have been shown to be associated with HRQOL in other studies, such as weight and physical activity [7, 40] were not collected at baseline in our study. Additionally, we had limited ability to detect weak associations due to our sample size. Lastly, we may not have been able to capture ovarian cancer-specific HRQOL concerns because the SF-36 is not a disease specific instrument. However, the SF-36 is widely used and facilitated the comparison of HRQOL in our study sample to other populations of cancer survivors and healthy adults.
Overall, this sample of ovarian cancer survivors one-year post-diagnosis had HRQOL similar to that of age-matched, female, general US population. We identified several characteristics associated with lower physical and mental functioning that could be used to identify individuals that are at risk for low or declining HRQOL. Symptom burden and disease recurrence emerged as important indicators in our population, as they were associated with not only baseline HRQOL, but also changes in physical HRQOL from one- to two-years post-diagnosis. Information on symptom burden and disease recurrence status would be available in clinical settings. These data could be used to identify individuals at risk for low or declining physical functioning for interventions to improve HRQOL. Despite the overall generally high HRQOL in this sample, our results suggest that interventions targeted to women undergoing treatment for recurrence or that address lingering symptoms, could be useful in addressing HRQOL disparities across these characteristics among ovarian cancer survivors at one-year after diagnosis and primary treatment.
Highlights.
Physical and Mental health related quality of life of ovarian cancer survivors 1 year post-diagnosis similar to general population
Lower physical HRQOL is associated with several variables that could be useful to inform interventions to improve HRQOL
Acknowledgments
Yang Zhou was supported by NCI: 5R01CA138556-05. Certain data used in this study were obtained from the Connecticut Tumor Registry located in the Connecticut Department of Public Health. The authors assume full responsibility for analyses and interpretation of the data collected from the Connecticut Tumor Registry. We thank all the study participants; the physicians of the participants; Rajni Mehta, Director of the Rapid Case Ascertainment Shared Resource of the Yale Cancer Center; and the following Connecticut hospitals: Charlotte Hungerford Hospital, Bridgeport Hospital, Danbury Hospital, Hartford Hospital, Middlesex Hospital, New Britain General Hospital, Bradley Memorial Hospital, Yale/New Haven Hospital, St. Francis Hospital and Medical Center, St. Mary’s Hospital, Hospital of St. Raphael, St. Vincent’s Medical Center, Stamford Hospital, William W. Backus Hospital, Windham Hospital, Eastern Connecticut Health Network, Griffin Hospital, Bristol Hospital, Johnson Memorial Hospital, Day Kimball Hospital, Greenwich Hospital, Lawrence and Memorial Hospital, Milford Hospital, New Milford Hospital, Norwalk Hospital, Sharon Hospital, and Waterbury Hospital.
Footnotes
CONFLICT OF INTEREST:
The authors declare that they have no conflicts of interest.
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References
- 1.Siegel RL, Miller KD, Jemal A. Cancer statistics, 2016. CA Cancer J Clin. 2016;66(1):7–30. doi: 10.3322/caac.21332. [DOI] [PubMed] [Google Scholar]
- 2.Khanna D, Tsevat J. Health-related quality of life--an introduction. Am J Manag Care. 2007;13(Suppl 9):S218–23. [PubMed] [Google Scholar]
- 3.McCorkle R, et al. Effects of a nursing intervention on quality of life outcomes in post-surgical women with gynecological cancers. Psychooncology. 2009;18(1):62–70. doi: 10.1002/pon.1365. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Greimel E, Daghofer F, Petru E. Prospective assessment of quality of life in long-term ovarian cancer survivors. Int J Cancer. 2011;128(12):3005–11. doi: 10.1002/ijc.25642. [DOI] [PubMed] [Google Scholar]
- 5.von Gruenigen VE, et al. Longitudinal assessment of quality of life and lifestyle in newly diagnosed ovarian cancer patients: the roles of surgery and chemotherapy. Gynecol Oncol. 2006;103(1):120–6. doi: 10.1016/j.ygyno.2006.01.059. [DOI] [PubMed] [Google Scholar]
- 6.Holzner B, et al. Fatigue in ovarian carcinoma patients: a neglected issue? Cancer. 2003;97(6):1564–72. doi: 10.1002/cncr.11253. [DOI] [PubMed] [Google Scholar]
- 7.Gil KM, et al. Baseline characteristics influencing quality of life in women undergoing gynecologic oncology surgery. Health Qual Life Outcomes. 2007;5:25. doi: 10.1186/1477-7525-5-25. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Schulman-Green D, et al. Quality of life among women after surgery for ovarian cancer. Palliat Support Care. 2008;6(3):239–47. doi: 10.1017/S1478951508000497. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Matulonis UA, et al. Long-term adjustment of early-stage ovarian cancer survivors. Int J Gynecol Cancer. 2008;18(6):1183–93. doi: 10.1111/j.1525-1438.2007.01167.x. [DOI] [PubMed] [Google Scholar]
- 10.Wenzel LB, et al. Resilience, reflection, and residual stress in ovarian cancer survivorship: a gynecologic oncology group study. Psychooncology. 2002;11(2):142–53. doi: 10.1002/pon.567. [DOI] [PubMed] [Google Scholar]
- 11.Kornblith AB, et al. Long-term adjustment of survivors of ovarian cancer treated for advanced-stage disease. J Psychosoc Oncol. 2010;28(5):451–69. doi: 10.1080/07347332.2010.498458. [DOI] [PubMed] [Google Scholar]
- 12.Sandadi S, et al. The effect of sleep disturbance on quality of life in women with ovarian cancer. Gynecol Oncol. 2011;123(2):351–5. doi: 10.1016/j.ygyno.2011.07.028. [DOI] [PubMed] [Google Scholar]
- 13.Gonzalez-Martin AJ, et al. Randomized phase II trial of carboplatin versus paclitaxel and carboplatin in platinum-sensitive recurrent advanced ovarian carcinoma: a GEICO (Grupo Espanol de Investigacion en Cancer de Ovario) study. Ann Oncol. 2005;16(5):749–55. doi: 10.1093/annonc/mdi147. [DOI] [PubMed] [Google Scholar]
- 14.Frost MH, et al. Spiritual Well-Being and Quality of Life of Women with Ovarian Cancer and Their Spouses. J Support Oncol. 2011 doi: 10.1016/j.suponc.2011.09.001. [DOI] [PubMed] [Google Scholar]
- 15.Rannestad T, Skjeldestad FE. Pain and quality of life among long-term gynecological cancer survivors: a population-based case-control study. Acta Obstet Gynecol Scand. 2007;86(12):1510–6. doi: 10.1080/00016340701743116. [DOI] [PubMed] [Google Scholar]
- 16.Awadalla AW, et al. Factors associated with quality of life of outpatients with breast cancer and gynecologic cancers and their family caregivers: a controlled study. BMC Cancer. 2007;7:102. doi: 10.1186/1471-2407-7-102. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Hodgkinson K, et al. Long-term survival from gynecologic cancer: psychosocial outcomes, supportive care needs and positive outcomes. Gynecol Oncol. 2007;104(2):381–9. doi: 10.1016/j.ygyno.2006.08.036. [DOI] [PubMed] [Google Scholar]
- 18.Lutgendorf SK, et al. Quality of life and mood in women with gynecologic cancer: a one year prospective study. Cancer. 2002;94(1):131–40. doi: 10.1002/cncr.10155. [DOI] [PubMed] [Google Scholar]
- 19.Lutgendorf SK, et al. Quality of life and mood in women receiving extensive chemotherapy for gynecologic cancer. Cancer. 2000;89(6):1402–11. [PubMed] [Google Scholar]
- 20.Bifulco G, et al. Quality of life, lifestyle behavior and employment experience: A comparison between young and midlife survivors of gynecology early stage cancers. Gynecol Oncol. 2012;124(3):444–51. doi: 10.1016/j.ygyno.2011.11.033. [DOI] [PubMed] [Google Scholar]
- 21.Robinson KM, et al. Diagnostic delay, quality of life and patient satisfaction among women diagnosed with endometrial or ovarian cancer: a nationwide Danish study. Qual Life Res. 2011 doi: 10.1007/s11136-011-0077-3. [DOI] [PubMed] [Google Scholar]
- 22.Greimel E, et al. Prospective assessment of quality of life of female cancer patients. Gynecol Oncol. 2002;85(1):140–7. doi: 10.1006/gyno.2002.6586. [DOI] [PubMed] [Google Scholar]
- 23.Sekse RJ, Hufthammer KO, Vika ME. Fatigue and quality of life in women treated for various types of gynaecological cancers: a cross-sectional study. J Clin Nurs. 2014 doi: 10.1111/jocn.12647. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Mirabeau-Beale KL, et al. Comparison of the quality of life of early and advanced stage ovarian cancer survivors. Gynecol Oncol. 2009;114(2):353–9. doi: 10.1016/j.ygyno.2009.05.009. [DOI] [PubMed] [Google Scholar]
- 25.Stewart DE, et al. “What doesn’t kill you makes you stronger”: an ovarian cancer survivor survey. Gynecol Oncol. 2001;83(3):537–42. doi: 10.1006/gyno.2001.6437. [DOI] [PubMed] [Google Scholar]
- 26.Liavaag AH, et al. Morbidity associated with “self-rated health” in epithelial ovarian cancer survivors. BMC Cancer. 2009;9:2. doi: 10.1186/1471-2407-9-2. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27.von Gruenigen VE, et al. Assessment of factors that contribute to decreased quality of life in Gynecologic Oncology Group ovarian cancer trials. Cancer. 2009;115(20):4857–64. doi: 10.1002/cncr.24520. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 28.Bezjak A, et al. Quality of life in ovarian cancer patients: comparison of paclitaxel plus cisplatin, with cyclophosphamide plus cisplatin in a randomized study. J Clin Oncol. 2004;22(22):4595–603. doi: 10.1200/JCO.2004.08.080. [DOI] [PubMed] [Google Scholar]
- 29.Clevenger L, et al. Sleep disturbance, distress, and quality of life in ovarian cancer patients during the first year after diagnosis. Cancer. 2013;119(17):3234–41. doi: 10.1002/cncr.28188. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Smith T, et al. The rationale, design, and implementation of the American Cancer Society’s studies of cancer survivors. Cancer. 2007;109(1):1–12. doi: 10.1002/cncr.22387. [DOI] [PubMed] [Google Scholar]
- 31.Stein KD, et al. Validation of a modified Rotterdam Symptom Checklist for use with cancer patients in the United States. J Pain Symptom Manage. 2003;26(5):975–89. doi: 10.1016/s0885-3924(03)00321-x. [DOI] [PubMed] [Google Scholar]
- 32.Ware JEaKM., Jr . SF-36 Physical & Mental Health Summary Scales: A Manual for Users of Version 1. 2. Lincoln, RI: QualityMetric Incorporated; 2001. [Google Scholar]
- 33.Cohen J. A power primer. Psychol Bull. 1992;112(1):155–9. doi: 10.1037//0033-2909.112.1.155. [DOI] [PubMed] [Google Scholar]
- 34.Kornblith AB, et al. Quality of life of women with ovarian cancer. Gynecol Oncol. 1995;59(2):231–42. doi: 10.1006/gyno.1995.0014. [DOI] [PubMed] [Google Scholar]
- 35.Casso D, Buist DS, Taplin S. Quality of life of 5-10 year breast cancer survivors diagnosed between age 40 and 49. Health Qual Life Outcomes. 2004;2:25. doi: 10.1186/1477-7525-2-25. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 36.Kim SI, et al. Quality of life and sexuality comparison between sexually active ovarian cancer survivors and healthy women. J Gynecol Oncol. 2015;26(2):148–54. doi: 10.3802/jgo.2015.26.2.148. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 37.Monk BJ, et al. Patient reported outcomes of a randomized, placebo-controlled trial of bevacizumab in the front-line treatment of ovarian cancer: a Gynecologic Oncology Group Study. Gynecol Oncol. 2013;128(3):573–8. doi: 10.1016/j.ygyno.2012.11.038. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 38.Lazenby M, McCorkle R, Fitch M. Interdisciplinary programmatic approaches to comprehensive distress screening for implementing the quality care standard of whole-patient care. Palliat Support Care. 2014;12(1):1–4. doi: 10.1017/S1478951513000114. [DOI] [PubMed] [Google Scholar]
- 39.McCorkle R, et al. An Advanced Practice Nurse Coordinated Multidisciplinary Intervention for Patients with Late-Stage Cancer: A Cluster Randomized Trial. J Palliat Med. 2015;18(11):962–9. doi: 10.1089/jpm.2015.0113. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 40.Zhou Y, G L, Cartmel B, Li F, Ercolano EA, Harrigan M, McCorkle R, Ligibel JA, Von Gruenigen VE, Gogoi R, Schwartz PE, Risch HA, Irwin ML. Randomized trial of exercise on quality of life and fatigue in women diagnosed with ovarian cancer: The Women’s Activity and Lifestyle Study in Connecticut (WALC). American Society of Clinical Oncology Annual Meeting; Chicago, IL: Journal of Clinical Oncology; 2015. [Google Scholar]