Survivorship Challenges and Information Needs after Radiotherapy for Oral Cancer

Abstract

PURPOSE

Oral cancer (OC) treatment can lead to considerable functional impairment, psychological distress, and decrements in quality of life. Given that limited information and support services are available for cancer survivors, many are turning to the Internet. However, little is known about the specific information and service needs of OC survivors. We conducted a descriptive study to: (1) characterize the associations between OC survivor functional problems and distress; and, (2) describe the Internet use of OC survivors, their satisfaction with existing sources of information/support, and their unmet information and service needs.

METHODS

Ninety-three oral cancer survivors completed cross-sectional surveys within one-year of completing radiotherapy.

RESULTS

Clinical levels of distress were 10% for depression and 16% for anxiety. Dental health, smell, and range of motion problems were significant (p<.05) determinants of both depression and anxiety symptoms. Eighty-three percent of survivors used the Internet; most used it to obtain health-related information or support. Unmet information needs included how to live a healthy lifestyle after treatment (87%), strategies for dealing with eating and speaking problems (81%), and information about what to expect in terms of side effects after treatment (76%).

CONCLUSION

Findings suggest that interventions that teach survivors coping and problem-solving skills to manage and cope with functional impairments may help to alleviate distress. Results of this study support the need for psychoeducational interventions for this population and showcase the potential of the Internet as a feasible mode for future dissemination.

INTRODUCTION

Cancers of the oral cavity and oropharynx, known as oral cancer (OC), are among the most common and rapidly rising cancers worldwide, with an estimated 400,000 new cases annually [1]. Five-year relative survival for all stages combined is 60% [2, 3]. Patients often undergo intensive radiotherapy, either alone or in combination with surgery or chemotherapy [4]. Given the high doses of radiation that are required to successfully treat their tumors, OC survivors experience significant side effects including xerostomia, hyposalivation, and rampant dental caries that persist long after they have been definitively treated [5]. Other side effects include malnutrition and problems with deglutition, mastication, speech, and taste [6]. These functional challenges have a profound impact on quality of life (QOL) [7], which is an important treatment endpoint given that both disease-specific and overall survival have been shown to be affected by deterioration of QOL in this population [8].

OC survivors who have undergone curative treatment also report significant rates (15–32%) of psychological distress (i.e., depression and/or anxiety symptoms) [7, 9]. Although few studies have examined causative factors, it has long been hypothesized that the impairment of basic human functions such as eating, speaking, and breathing caused by disease progression and treatment contribute significantly to patient distress [10, 11]. One study evaluated 68 OC patients six months to 6 years after treatment and found a strong association between distress and head and neck specific QOL domains [7]; however, the domains that were examined did not include oral health outcomes attributed to radiotherapy (e.g., xerostomia, mucositis, malnutrition/weight loss) [12]. Given that the majority of OC patients undergo radiotherapy at some point in their treatment trajectory [4] a clearer understanding of the linkages between psychological distress and the functional problems caused by radiotherapy is needed.

Psychoeducational interventions can improve quality of life (QOL) and enhance coping with cancer [13]; however, few programs have been developed for cancer survivors and none have been developed for OC survivors, specifically [14]. This is especially troubling in light of research showing that the perception of having obtained adequate information and support is a significant predictor of positive rehabilitation outcomes in the post-treatment period [15].

Given the limited information and support services available for cancer survivors [16], it is not surprising that many are turning to the Internet [17, 18]. In fact, web-based psycho-educational interventions are becoming increasingly common for many health conditions and should be considered for OC survivors given that they may allow for more cost-effective treatments with greater reach than in-person programs [19]. However, very little is known about the information and service needs of OC survivors. In order to develop more appropriate psychoeducational resources and interventions for this population, we conducted a descriptive study to characterize the associations between OC survivor oral health outcomes/functional problems attributed to radiotherapy and their psychological distress. We also sought to describe the Internet use of OC survivors, their satisfaction with existing sources of information/support, and their unmet information and service needs.

METHODS

Procedures

This study was approved by the Icahn School of Medicine at Mount Sinai Institutional Review Board. To identify participants, we queried the Mount Sinai Data Warehouse (MSDW), which is a database that has clinical, operational, and financial data for a list of patients with International Classification of Diseases, Ninth Revision (ICD-9) codes that could feasibly be used for oral cancer. Using this, we searched electronic medical records to identify individuals who met the following eligibility criteria: (1) completed radiotherapy for OC (initial diagnosis) within the last 12 months, (2) 18 years or older at the time of diagnosis, (3) could speak/read English, and (4) able to provide informed consent. We chose the 12 month time frame because we were interested in understanding survivorship challenges in the acute phase after treatment ends when survivors are focused on rehabilitation. Three hundred and twenty-seven individuals were identified as being potentially eligible to participate, so packets containing a cover letter describing the study, the study questionnaire, and a postage-paid envelope were mailed. Up to three telephone calls were made to confirm eligibility and to encourage eligible individuals to return surveys. Similar methods for tracing, contacting, and recruiting survivors have been reported elsewhere [20].

We were able to contact 291 of the 327 survivors we mailed questionnaires to verify their eligibility and interest. Twenty-five individuals were deceased, 114 were ineligible: 19 were still undergoing treatment or their cancer recurred, 53 finished treatment more than a year ago, 27 did not have a primary diagnosis of OC, and 15 did not speak English and could therefore not complete the questionnaire. Ninety-three of the 152 survivors who were eligible provided informed consent and returned the questionnaire, resulting in an overall response rate of 61%. No significant differences were observed between respondents and non-respondents on the basis of race, cancer type, and age at the time of the study.

Measures

Oral health

The 50-item Vanderbilt Head and Neck Symptom Survey version 2.0 (VHNSS 2.0) is a validated measure designed specifically to assess the prevalence and severity of adverse acute and late oral health outcomes specific to patients with head and neck cancer treated with radiation therapy [21]. The measure reflects problems in 13 functional domains including: nutrition, swallowing/eating foods, xerostomia, mucositis, pain, excess mucus, speech/communication, hearing, taste change, smell, dental health, mucosal sensitivity (i.e., a burning sensation in the lining of the mouth and throat), and range of motion. Responses are scored on a 0 to 10 scale (0=none; 10=severe). When interpreting VHNSS functional domain scores, those ≥ 1 indicate at least some toxicity, and those ≥4 indicate moderate to severe toxicity [21]. In this study, internal consistency reliability (Cronbach’s alpha) for the different functional domain subscales ranged from .72 to .94.

Psychological distress

The 6-item PROMIS short-form depression and anxiety measures were used to assess psychological distress [22]. The depression measure assesses negative mood and views of the self and the anxiety measure assesses fear, anxious misery (e.g., worry), and hyperarousal. For both measures, the time frame is “the past 7 days”; responses range from 1 (never) to 5 (always) and are summed to form a raw score that can then be rescaled into a T-score (standardized) with a mean of 50 and standard deviation (SD) of 10 using tables available through the PROMIS website. Thus, a T-score of 60 is 1SD above the mean, and a T-score of 40 is 1SD below the mean [22]. In this study, internal consistency reliability (Cronbach’s alpha) for depression was α=.90 and for anxiety it was α=.95.

Internet use

Using items we developed specifically for this study, survivors answered questions about Internet use (e.g., whether they used the Internet, average number of hours used per week, whether/how they accessed cancer-related information) and mode of access (computer, phone, or both).

Unmet information and service needs

Survivors answered questions about where they turned when they wanted information/support (i.e., to the Internet, friends, family, healthcare professionals), what purpose these interactions served (i.e., to obtain emotional support, practical advice, or medical information), and how helpful they were (0=no help to 10=a lot of help). In addition, survivors were provided with a list of ten topics based on Fang et al. [23], and instructed to indicate whether having additional information would be helpful to them on a scale of 0=not at all helpful to 10=extremely helpful. Topics addressed medical needs (e.g., general information about OC side effects), practical needs (e.g., strategies to improve swallowing after treatment), emotional needs (e.g., strategies to manage stress and anxiety), and social/relationship needs (e.g., intimacy and sexuality after treatment). Finally, participants were provided with a list of 5 services that could be offered through a Web-based intervention (i.e., tools to track rehabilitation goals, message boards, survivors’ stories, email/text reminders, and interface with healthcare professionals) and instructed to indicate their degree of interest in using them on a scale of 0 (not at all) to 4 (completely).

RESULTS

Sample Characteristics

Table 1 details participants’ socio-demographic and medical characteristics. The average age was 61.5 years (SD=10.5, Range 39 to 88 years); 59% of the sample was age 60 or older. Average length of time since completing radiotherapy was 8 months (SD = 3 months; Range = 1 month to 1 year). Seven percent of patients had completed radiotherapy less than 3 months prior to the questionnaire assessment, 23% completed radiotherapy 3–6 months prior, 24% completed radiotherapy 6–9 months prior, and 46% completed the assessment 9–12 months prior.

Table 1.

Demographic and disease characteristics of the study sample (N = 93)

	N (%)		N (%)
Sex		Cancer Type
Man	73 (78)	Oral Cavity	26 (28)
Woman	20 (22)	Oropharynx	67 (72)
Ethnicity		Stage
Hispanic	11 (12)	1	17 (18)
Non-Hispanic	70 (75)	2	7 (8)
		3	18 (20)
Race		4	50 (54)
White	78 (83)
Asian	6 (7)	Treatment
African-American	6 (7)	Radiation only	3 (3)
Other	3 (3)	Chemoradiation	22 (24)
		Surgery + Radiation	32 (34)
Marital Status		Surgery + Chemoradiation	36 (39)
Married	66 (71)
Single	27 (29)
Educationa
No high school diploma	6 (7)
High school diploma	23 (25)
Technical/vocational school	18 (19)
Some college	15 (16)
College diploma	5 (5)
Graduate/professional degree	26 (28)
Employed
Full-time	33 (35)
Part-time	8 (9)
Unemployed/Retired	52 (56)

Note: N= Sample size; M= mean; SD= standard deviation

Prevalence and Severity of Oral Health Problems and Psychological Distress

Table 2 details the severity of oral health/functional problems as measured by the different VHNSS functional domain subscales [21]. Using the established cut-off scores, 86% of survivors complained of at least some problems (scores ≥ 1 on a 0 to 10 scale) with nutrition and a high percentage (93%) reported at least some difficulty with swallowing or eating. Ninety percent reported some xerostomia and 44% reported moderate to severe symptoms (i.e., scores ≥4 out of 10). Mucositis was noted by 85% of survivors; 86% reported some mucosal sensitivity and 42% reported moderate to severe symptoms. Trouble speaking and being understood was reported by 76% of survivors. Taste alterations were experienced by 81% of survivors; 19% rated them as moderate to severe. Almost 93% were affected by dental health issues; 31% rated these problems as moderate to severe. Forty-five percent reported at least some hearing problems as a result of their treatment, and 71% reported range of motion problems. Side effects that were rated as the most severe were: xerostomia, mucosal sensitivity, and dental health problems.

Table 2.

Severity of oral health/functional problems and psychological distress based on stage, age, and sex

	Stage			Age			Sex
	Early Stage Mean(SD)	Late Stage Mean(SD)	t	Less than 60 years Mean(SD)	Age 60 or older Mean(SD)	t	Men Mean(SD)	Women Mean (SD)	t
Nutrition	2.3 (3.0)	2.6 (2.6)		2.3 (3.0)	2.5 (2.7)		2.5 (2.8)	1.9 (2.6)
Swallowing	2.7 (2.1)	3.4 (2.2)		3.3 (2.5)	2.9 (2.0)		3.2 (2.3)	2.7 (2.1)
Xerostomia	3.2 (2.6)	5.1 (3.1)	−3.2**	4.6 (3.0)	3.9 (3.0)		4.4 (3.0)	3.6 (3.1)
Excess Mucus	1.7 (2.2)	2.5 (2.7)	−1.7#	2.7 (2.7)	1.7 (2.2)	1.92#	2.2 (2.5)	1.6 (2.1)
Mucositis	1.7 (2.5)	2.2 (2.9)		2.7 (3.0)	1.5 (2.4)	2.16*	2.2 (2.9)	1.0 (2.0)	1.7#
Mucosal Sensitivity	2.6 (2.6)	4.1 (2.6)	−2.7*	3.4 (2.9)	3.2 (2.6)		3.5 (2.7)	2.7 (2.6)
Pain	1.9 (2.1)	2.1 (2.5)		2.8 (2.6)	1.4 (1.8)	3.0**	2.1 (2.3)	1.5 (2.0)
Speech	2.5 (2.5)	2.8 (2.6)		3.4 (2.8)	2.1 (2.2)	2.5*	3.1 (2.6)	1.2 (1.6)	3.0**
Taste	1.9 (1.8)	2.6 (2.0)	−1.8#	2.8 (2.1)	1.8 (1.7)	2.4*	2.3 (1.9)	1.7 (1.8)
Dental	2.7 (2.4)	3.3 (2.3)		3.4 (2.8)	2.1 (2.2)		3.2 (2.5)	2.2 (1.9)
Smell	2.1 (2.8)	2.8 (2.9)		3.5 (2.8)	1.9 (2.2)	3.1**	2.8 (2.7)	1.7 (2.1)	1.7#
Hearing	2.0 (2.9)	2.3 (3.2)		2.8 (3.6)	1.5 (2.4)	2.0*	2.3 (3.1)	1.0 (2.3)	1.7#
Range of Motion	2.1 (2.8)	3.6 (2.9)	−2.5**	3.1 (3.8)	2.6 (2.7)		2.9 (2.9)	2.5 (2.9)
General	1.4 (1.6)	1.7 (1.9)		2.2 (2.1)	1.1 (1.2)	3.4**	1.7 (1.8)	1.0 (1.0)
Depression	9.3 (4.1)	10.1 (4.7)		11.4 (5.2)	8.2 (3.0)	3.6**	10.2 (4.7)	7.6 (2.0)	2.3**
Anxiety	10.0 (4.4)	10.2 (5.7)		12.6 (6.3)	8.8 (4.1)	3.4**	10.6 (5.4)	9.9 (5.8)

Note: Higher scores indicate greater severity. SD=standard deviation; t = t-tests testing between group mean differences.

^*p<.05,

^**p<.01, p<.10

Nine survivors (10%) had PROMIS Depression T-scores >60 (+1SD), indicating high levels of depression and 15 survivors (16%) had PROMIS Anxiety T-scores >60, indicating high levels of anxiety [22]. Independent t-tests were conducted to examine mean differences in oral health/functional problems and psychological distress based on groups for cancer site (oral cavity versus oropharynx), age (< 60 versus ≥ 60 years old), sex (male versus female), and stage. Stage was divided into early (stages 1 to 3) versus late/advanced (stage 4) based on current staging guidelines for oral and head and neck cancers [24, 25]. There were no differences based on cancer site so these results were not tabled. However, significant differences were found for stage, age, and gender (see Table 2). Specifically, late stage patients reported significantly (p<.05) more xerostomia, excess mucus, mucosal sensitivity, and taste and range of motion problems than early stage patients. Younger patients (< 60 years) reported significantly (p<.05) more mucositis, pain, and speech, taste, smell, and hearing problems than older patients (≥ 60 years). They also reported more anxiety and depression. Men reported significantly more speech problems and depression than women.

Determinants of Distress

Two stepwise regressions were conducted to explore the socio-demographic (e.g., age, gender, marital status), medical (e.g., type of OC, stage, length of time since treatment), and oral health predictors of depression and anxiety symptoms among OC survivors. Sociodemographic and medical variables were entered first into the model, followed by survivors’ physical/functional limitations (i.e., VHNSS subscales). The final model for anxiety was significant, adjusted R² = .51, F (19, 84) = 4.25, p < .001, with six predictors including time since treatment and problems with xerostomia, speech, dental health, smell, and range of motion (see Table 3). The final model for depression was also significant R² = .52, F (19, 84) = 5.79, p < .001, with five predictors including problems with nutrition, pain, dental health, smell, and range of motion (see Table 3).

Table 3.

Results of stepwise regression analysis showing the determinants of survivor anxiety and depression (N=93)

Anxiety
Predictor	B	t	p
Time since treatment	.21	2.42	.02
Xerostomia	.30	2.20	.03
Dental health issues	.43	2.24	.03
Speech problems	.36	2.33	.02
Problems with smell	.27	2.15	.04
Range of motion issues	.33	2.10	.04
Depression
Predictor	B	t	p
Problems with nutrition	.37	1.98	.05
Pain	.37	2.37	.02
Dental health issues	.72	3.80	.001
Problems with smell	.31	2.5	.02
Range of motion issues	.31	1.98	.05

B= standardized coefficient, t= t-test, p = significance level

Internet Use

Eighty-three percent of survivors reported using the Internet. A chi-square analysis was conducted to determine if internet usage differed by age group (i.e., under age 50, 50 to 65 years old, and over age 65). Results showed that fairly high percentages of survivors used the internet regardless of age. Specifically 100% of survivors below the age of 50 (N= 14 out of 14), 84% of participants age 50 to 65 (N=37 out of 44), and 87% of participants age 65 and over (N=26 out of 30) said they used the internet (χ² = 2.49, p = .29). The primary mode of access was via computer (55%); 35% of survivors accessed the Internet equally through their telephone and the computer. The average hours of Internet use per week was 3.4 (SD=4.2; Range =.5 to 30 hours). Almost 70% of survivors used the Internet to research cancer-related information. Forty-one percent regularly used social networking sites like Facebook or Twitter, and 53% of individuals who used social networking sites used them primarily to share and access health-related information or support.

Unmet Information and Service Needs

Whereas survivors sought out emotional support from family members (60%) and friends (49%) and medical information (70%) from medical professionals, their use of the Internet was more varied (see Table 4). Relatively equal numbers said they sought out emotional support, practical advice and medical information on the internet (range = 31% to 39%) and that they were moderately satisfied with the information/support received (Range = 4.8 to 7.0 out of 10).

Table 4.

Percent of survivors seeking information and support from various sources and their satisfaction with the support received (N=93)

	Sources
	Internet		Family Members		Friends		Medical Professionals
	Percent seeking support	Satisfaction with support received Mean(SD)	Percent seeking support	Satisfaction with support received Mean(SD)	Percent seeking support	Satisfaction with support received Mean(SD)	Percent seeking support	Satisfaction with support received Mean(SD)
Emotional Support	31%	5.3 (3.2)	60%	6.6 (2.9)	49%	6.5 (2.6)	24%	5.2 (3.4)
Practical Advice	39%	6.2 (2.8)	39%	5.9 (3.1)	29%	5.4 (3.4)	61%	6.5 (2.5)
Medical Information	33%	6.3 (3.0)	35%	5.5 (3.4)	26%	4.8 (2.9)	70%	7.0 (2.7)

SD = standard deviation

As Table 5 shows, the most popular topic for survivors was how to live a healthy lifestyle after treatment (87%). This was followed by strategies to improve eating and speaking problems (81%) and information about side effects/what to expect after treatment (76%). Over 50% were interested in strategies for managing psychosocial concerns (e.g., dealing with stress, intimacy/sexuality issues, communicating better with family members, handling social situations). T-tests were conducted to examine mean differences in information needs based on age group, gender, type of OC, and disease stage. The only significant difference was that women expressed a greater interest in tips for dealing with appearance and body image concerns than men t = −2.31, p = .02. Finally, 67% of survivors were interested in communicating with healthcare providers and medical professionals online and over half were interested in tracking goals, exchanging tips and practical information with other OC survivors, and receiving text/email reminders to engage in self-care.

Table 5.

Information and service needs of OC survivors (N=93)

	N(%)
Topics
1. Information about side effects	71(76)
2. Strategies to improve eating and speaking problems	75(81)
3. Strategies for managing pain and fatigue	67 (72)
4. Strategies for managing social situations (e.g., eating in public)	47 (51)
5. Tips for dealing with appearance and body image concerns	43(46)
6. Tips for coping with stress and anxiety	50(54)
7. Tips for dealing with intimacy and sexuality concerns	51(55)
8. Strategies for improving communication with family members	50(54)
9. How to enhance personal growth after cancer	55(59)
10. How to live a healthy lifestyle after treatment	81(87)
Services
1. Track goals	49(53)
2. Read other survivors’ stories	43(46)
3. Exchange health tips and practical information with other OC       survivors	49(53)
4. Interact with medical professionals	62(67)
5. Text and email reminders	49(53)

DISCUSSION

This study sought to characterize the functional challenges experienced in the first year following radiotherapy for OC and examine how these challenges contribute to survivor distress. Findings were consistent with research showing that adverse oral health outcomes are common, affecting a wide range of functions in this population [26]. Xerostomia, mucosal sensitivity, and dental health problems were almost universal complaints. Even though many patients did not have severe symptoms, their mere presence was associated with distress, which should be kept in mind when counseling patients. Furthermore, unlike xerostomia and dental health problems which are well-recognized side effects [27–29], mucosal sensitivity, which can adversely affect food intake and oral health maintenance is an understudied domain where prevalence data is lacking [21]. Eighty-six percent of survivors experienced mucosal sensitivity, and 42% reported moderate to severe symptoms. Thus, more research is needed to better understand how to effectively control these symptoms.

Even though clinical levels of psychological distress were slightly lower in this sample compared to other studies in OC [9, 30], there was ample variation in both depression and anxiety symptoms and survivors who expressed greater physical/functional problems also reported higher levels of distress. The lower rates of distress found here may be a reflection of our focus on survivors who underwent radiotherapy (alone or combined with other treatments), whereas previous studies have focused on patients who were exclusively treated with surgery. Facial disfigurement has long been viewed as one of the most distressing aspects of oral and head and neck cancers due to the vital role that the facial region plays in people’s self-concept, interpersonal relationships, and communication [31]. Large-scale studies are thus needed to compare those who have undergone different treatment modalities to disentangle the role that treatment and functional impairments play in survivor distress.

Dental health, smell, and range of motion problems predicted both depression and anxiety symptoms, whereas deficits in other functional domains uniquely predicted depression or anxiety. Specifically, nutrition problems and pain were unique predictors of depression and time since treatment and xerostomia were unique predictors of anxiety. Although more research is needed to better understand these associations, dental health and range of motion problems may be highly distressing because they impact survivors’ ability to maintain adequate oral hygiene, speak, and consume adequate nutrition. Likewise, problems with smell may be distressing because they interfere with survivors’ ability to taste and enjoy food. Psychosocial interventions that teach survivors coping and problem-solving skills to deal with these functional deficits may help to alleviate distress.

The finding that greater time since treatment was associated with greater anxiety deserves further study using a prospective study design given that research in breast cancer has shown that anxiety significantly decreases the farther out patients are from diagnosis [32, 33]. Given that increased symptom burden is associated with more cancer-related worry [33], OC survivors may have been anxious because side effects were not resolving as fast as expected. Their anxiety may have also been due to OC-specific challenges such as uncertainty surrounding transmission of the human papilloma virus (HPV) and the increased risk of recurrence for OC relative to other cancers [34, 35]. Future studies should determine the prevalence and causes of fear of recurrence in an effort to design psychosocial interventions to alleviate anxiety in this population. For example, studies have shown that interventions that provide training in uncertainty management improve cognitive reframing, cancer knowledge, and a variety of coping skills in cancer survivors [36].

Consistent with past research, younger aged and advanced stage OC survivors reported more functional problems [37, 38]. Younger survivors also reported greater distress. It is possible that the different role demands of younger versus older survivors and their expectations about the future shape how they cope [39]. Older survivors may also have partners who are not engaged in full time employment who can assist with caregiving. Research is needed to clarify the finding that men reported more depression than women in light of past research demonstrating that female patients have higher rates of depression [38]. One possibility is that the majority of our participants had oropharynx cancers which are more common in men and often caused by HPV, which is a sexually transmitted virus [40, 41]. A recent study of 62 oropharynx patients found that 20% reported that knowing that their cancer was caused by HPV had a negative impact on their relationship with their partner [42]. In some cases, the diagnosis led to disclosure of an infidelity, and in others, it resulted in decreased sexual intimacy due to concerns about communicability. Thus, a diagnosis of HPV+ oropharynx cancer may have far-reaching implications for male patients, their sexual partners, and their relationships with one another which can lead to confusion and distress. Although we did not collect data on HPV status, our findings suggest that younger survivors, men, and those treated for advanced disease are at-risk subgroups for poor oral health/function and distress following radiotherapy and may benefit from psychoeducational programs.

A unique aspect of this study is that it demonstrated a growing awareness of and receptivity to Internet-based programs and health technology among OC survivors. A high percentage reported Internet use, which reflects an overall growing trend of increasing Internet access and use among cancer survivors [43]. Despite this, survivors relied primarily on medical professionals and family members for information and support and expressed a number of unmet information needs including how to live a healthy lifestyle after treatment, how to deal with eating and speaking problems, and more information about side effects and what to expect after treatment. They also expressed interest in reaching out to other survivors and healthcare professionals online to obtain information and support.

Despite its strengths (e.g., attention to an understudied population, examination of associations between physical/functional problems and distress, characterization of unmet needs), this study had some limitations. The sample size was modest and the mail out response rate may affect generalizability. Second, this was a cross-sectional study. Information and service needs may change over time. Third, survivors were racially/ethnically homogenous and may not be representative of OC survivors in general. Fourth, stepwise regression analysis is an exploratory data analysis technique. Given that few studies have examined determinants of distress in this population, we felt the approach was justified and will help guide future work.

Overall, results suggest several opportunities to integrate web-based interventions in OC survivorship care. For example, online programs that provide information and services to encourage self-management and connection with healthcare professionals may facilitate rehabilitation and alleviate distress. Social media platforms may facilitate patient engagement, social connection with other survivors, and delivery of practical information [44]. Finally, content sharing applications may make it easier for survivors to connect to other survivors who are dealing with the same cancer, enhance overall perceptions of social support, and augment information from the healthcare team by providing practical tips for managing the day-to-day aspects of life after treatment [45]. However, more research is needed to determine whether online programs can address the wide range of survivor unmet information and service needs that were identified and whether they have discernible effects on survivor outcomes relative to other delivery formats.

In conclusion, few programs have been developed for OC survivors despite the fact that patients have considerable information and support needs that are not being addressed. Psychoeducational interventions that teach coping and problem-solving skills may alleviate distress and our findings suggest that survivors are interested in such programs. Moreover, the high percentage of survivors already using the Internet to access health-related information supports the feasibility of using the Internet to disseminate such programs to OC survivors who are post-treatment and do not have regular contact with the healthcare system.