An Innovative Website in the United States for Meeting the Emotional and Supportive Care Needs of Young Adults with Cancer

Abstract

This paper describes the development of an institution-specific website designed to meet the supportive and emotional needs of young adults (18–39 years old) with cancer in the United States. The website contains information about topics of particular interest to young adults, coping skills education, and resources; and has social networking capacity. In a survey of website users, participants reported increased “connectedness” and variable impact on feelings of sadness, fear, and worry. Recommendations are made for fostering peer interactions, encouraging staff to educate website users around self-monitoring for distress, and incorporating relevant content on the website.

Young adulthood is richly characterized by identity development, differentiation from family of origin, pursuit of a career, and exploration of intimate relationships.¹ A cancer diagnosis during this developmental phase can disrupt normative processes and generate unique psychosocial needs.^2–4 Young adults (YAs) with cancer report high levels of distress, including depression, anxiety, and suicidal ideation.^5–7 The National Comprehensive Cancer Network guidelines call for developmentally appropriate mental health services for YAs with cancer,⁸ yet this population is not currently receiving adequate psychosocial services.^9,10 In a recent study of unmet needs in adolescents and young adults with cancer, approximately 25% of YA cancer patients reported an unmet need for information related to their cancer, compared with 10.3% among adolescents (14–19 years old). A notable proportion also reported unmet needs for mental health services (32.6% among 20–29 year olds and 38.5% among 30–39 year olds) and family counseling (19.6% among 20–29 year olds and 44.6% among 30–39 year olds).⁹

Multiple factors may interfere with YAs' access to supportive care services. Many YAs are initiating their careers, relationships, and families.¹ These transitions and their associated responsibilities may reduce YAs' ability to attend mental health appointments. Factors such as cost, service availability, and limited availability of providers trained in YA-specific services may also be significant barriers.^11–13 Further, cancer patients are often reticent to increase the number of visits to their cancer clinic due to its association with distressing physical and psychological symptoms and events, the reminder of their cancer, and the desire to preserve normalcy.^14,15

The internet provides a mechanism for offering supportive care services to YAs with cancer that may overcome these barriers. YAs are generally familiar and comfortable with computer-based applications^15,16 and use computers and the internet at higher rates than older adults.¹⁷ The majority of YAs aged 18–29 years old who are online use social networking sites, such as Facebook, with nearly half accessing these websites daily.¹⁸

Internet-based supportive care services are consistent with recent calls to utilize innovative delivery models to improve access to care and better meet patients' needs in a cost- and time-effective manner.^19–22 Benefits of using the internet to provide supportive services include convenience of access, potential for peer support, inclusion of individuals living in isolated or rural areas, and portability.^23,24 While internet interventions cannot replace the benefits of face-to-face mental health services, interventions that utilize the internet for psycho-education and online social networking may serve as important population-based emotional support services. For example, a recent study reviewed posts to an online cancer support forum for adolescents and young adults with cancer and found that, in response to peers' posts expressing uncertainty, 67% of posts contained multiple types of support, including informational, emotional, and esteem.²⁵

This paper aims to describe the development and content of a website specific to the needs of YAs (ages 18–39) with cancer and to report preliminary data on the perceived helpfulness and emotional impact of the website on participants.

Methods

Goals of the website

Given the documented unmet supportive care needs of YAs with cancer and the appropriateness of computer-based interventions for this population, our academic comprehensive cancer center in the United States developed a targeted website for YA cancer patients aged 18–39 treated in our adult medical oncology clinic. The website's aims were to provide helpful relevant information; reduce isolation by improving connectedness; and reduce cancer-related worry, sadness, and fear. Table 1 shows how website content maps with these aims.

Table 1.

Website Content

Content area aim(s) targeted	Subcategories
Psycho-educational materials • Provide helpful relevant information	• Mindful eating/nutrition • Physical activity/exercise • Intimacy/sexual health • Spirituality
Self-help resources • Provide helpful relevant information • Reduce cancer-related worry, sadness, and fear	• Coping with cancer • Managing anxiety/worries • Communicating effectively • Problem solving • Identifying values • Personalized cancer timeline (experiences during nodal times in treatment and beyond)
Resources for YA-specific problems • Provide helpful relevant information • Reduce isolation by improving connectedness • Reduce cancer-related worry, sadness, and fear	• Institutional navigation • College and cancer • Work issues • Fertility and family planning • Parenting young children • Changing relationships • Local and national YA cancer events • Relevant news and research • Links to internet-based resources
Cancer center YA program offerings • Reduce isolation by improving connectedness	• Program and event advertisements • Monthly calendar and upcoming events • Volunteer opportunities
Content to promote feelings of normalcy • Reduce isolation by improving connectedness	• Art wall • Just for laughs • Around Boston (location of the cancer center)

YA, young adult.

Website development

Website development occurred over eight months and was informed by existing research on internet support resources and review of established websites for YAs and medical populations, including CancerConnect (http://cancerconnect.com), Planet Cancer (http://myplanet.planetcancer.org), and Stupid Cancer (http://stupidcancer.org). The website was purchased from a web developer who had created a national social networking website for people with cancer and their caregivers. It has a uniform resource locator (URL) that requires a unique user name and password for each patient. To address ethical considerations of using the internet for support of this population, individual participants had to opt in to use the website and a disclaimer was added to the homepage that stated limitations of the website. In addition, website administrators were given the ability to delete any inappropriate posts. Seven YA patients representing a range of diagnoses, cancer stages, and ages participated in three focus groups over a 6-month period to provide feedback on the website's style (i.e., colors and font), relevance, content, and appropriateness of language used. For example, focus group members recommended that patients be given a more prominent “voice” on the website. To achieve this, focus group members wrote personal stories that were added to the website's content under various sections, including “changing relationships” and “my cancer timeline.”

Four healthcare professionals (two nurses, a social worker, and a psychologist) who work with YA cancer patients also provided one-time feedback on an advanced version of the website. Professionals were asked to comment on the appeal of the website to YAs, missing content, and the tone of the existing content. Professionals were enthusiastic about the website, recommended few changes, and expressed a strong desire to refer their YA patients to the website. The YAP@DFCI (Young Adult Program at Dana-Farber Cancer Institute) website (http://dana-farber-yap.org) was launched in September 2011.

Website content

Content categories and text for the website were created by psychologists and social workers with expertise in the care of YA cancer patients. Content areas include: (1) psycho-educational materials, (2) self-help resources, (3) resources for YA-specific problems (in both text and webinar formats), (4) cancer center YA program offerings, and (5) content to promote feelings of normalcy (Table 1). The website also has social networking features including private messaging, video chat, personal blog posting, an activity feed in which users can post comments, and forums in which YAs can engage in topic-specific discussions, such as parenting and navigating college during treatment. These forums are moderated by psychosocial staff that work with YA patients and can facilitate discussions within specific topic areas.

Ongoing website maintenance requires five hours per week from a designated staff member who disseminates passwords, welcomes new members, monitors website postings for appropriateness, and integrates new content. This staff member also oversees training for the forum moderators to ensure consistent and appropriate moderator outreach.

Website feedback survey methods

Website analytics are collected on an ongoing basis and include the number of registered website users, the number of visits made to the website, the amount of time spent on the website per visit, and the percentage of YAs who access the website from a mobile device. In addition, YAs registered on the website were emailed a link to an electronic survey assessing their website use, satisfaction with the website, and the impact of the website on their emotional well-being. Survey responses were collected and managed using REDCap,²⁶ an electronic data capture tool, between September 2012 and October 2013. All measures were created for the purpose of this study. Specifically, YAs were asked to rate the helpfulness of the overall website and specific website components on a 5-point Likert scale from 0 (“not at all helpful) to 4 (“very helpful”). Participants also rated the impact of the website on their feelings of connectedness, worry, sadness, and fear due to cancer on a 5-point Likert scale with higher scores indicating a positive impact of the website (see Table 2 for response options). Each item assessing connectedness, worry, sadness, and fear was followed by an open-ended question asking YAs to describe how the website impacted these feelings. These emotions were assessed because the goal of the website was to increase connectedness and reduce worry, sadness, and fear. Frequency analyses were conducted on the survey data and descriptive statistics (i.e., mean and standard deviation) were used to describe the website analytics data.

Table 2.

Participant Rating of Website Impact on Emotional Well-Being and Perceived Helpfulness, n (%)

	Much more	Slightly more	No impact	Slightly less	Much less
Worry	1 (3)	5 (15)	18 (53)	9 (26)	1 (3)
Sadness	1 (3)	4 (12)	19 (56)	9 (26)	1 (3)
Fear	1 (3)	2 (6)	21 (62)	9 (26)	1 (3)

	Very disconnected	Moderately disconnected	No impact	Moderately connected	Extremely connected
Connectedness	1 (3)	0 (0)	5 (15)	23 (68)	5 (15)

	Not at all helpful (score=0)	1	2	3	Very helpful (score=4)
Website overall	0 (0)	5 (13)	19 (49)	9 (23)	6 (15)
Social networking	3 (8)	5 (12.8)	11 (28.2)	13 (33.3)	7 (17.9)
Clinical services	0 (0)	3 (8)	12 (32)	19 (50)	4 (11)
Skill building	2 (6)	2 (6)	18 (50)	9 (25)	5 (14)
Health/lifestyle	0 (0)	3 (8)	15 (42)	14 (39)	4 (11)
Institute resources	0 (0)	4 (11)	7 (19)	19 (53)	6 (17)
“For fun”	7 (21)	10 (29)	9 (27)	4 (12)	4 (12)
Cancer specific	7 (21)	4 (12)	8 (24)	11 (32)	4 (12)

All data collection methods were reviewed by the Institutional Review Board (IRB), which determined that the survey data and analytics were exempt from IRB approval.

Results

Analytics data collected on October 20, 2013 indicated that 188 YAs had registered since the September 2011 launch of the website. In addition, of the 784 website visits during this 2-year period, 36.5% were made from a mobile device.

Thirty-nine YAs who had joined the website when aged 18–39 completed the online survey, though only 30 reported demographic information (Table 3). To maximize the sample size, all data for each item was included in the analyses. As a result, the sample size changes across items due to missing data. On average, participants had been registered on the website for approximately eight months (n=39; mean=8.65 months; standard deviation [SD]=7.80). Over three-quarters (n=31/39, 79%) of participants reported logging onto the website up to 20 times since registering for the website, and 59% (n=23/39) reported logging on twice a month or more. Patients reported spending an average of 10.39 minutes on the website per visit (n=37; SD=6.98).

Table 3.

Sample Characteristics

Demographic/disease characteristics (N=30)	Total sample, n (%)
Age, mean (SD)	33.6 (6.3)
Gender: Female	22 (73)
Marital status
Married	14 (47)
Single	12 (40)
Other	4 (13)
Dependent children: No	23 (77)
Employment status
Full-time	12 (40)
Part-time	6 (20)
Medical leave	6 (20)
Full-time student	1 (3)
Other	5 (17)
Cancer diagnosis (n=29)
Breast	14 (48)
Brain tumor	4 (14)
Leukemia/lymphoma	9 (31)
Other	2 (7)

Note. The difference in sample size for cancer diagnosis is due to missing data (n=1).

SD, standard deviation.

Helpfulness

The majority (n=34/39; 87%) of respondents found the overall website to be helpful (i.e., selecting ≥2 on a scale from 0=“not at all helpful” to 4=“very helpful”; Table 2). The largest proportion of respondents reported that the following content areas were helpful: clinical services information (n=35/38; 92%), health/lifestyle resources (n=33/36; 92%), skill-building (n=32/36; 89%), institute-specific information (n=32/36; 89%), and social networking (n=31/39; 79%). Qualitative responses around website helpfulness included addressing “coping long term,” getting “information from reliable sources,” and learning about “how to control anxiety.”

Connectedness

A majority of the sample (n=28/34; 82%) reported that the website helped them feel “moderately” or “extremely” connected to other YAs with cancer. Over one-fourth (n=10/38; 26%) reported contacting other website users outside the context of the website. In open-ended responses, many participants stated that the website made them realize that they are not alone in their cancer experience. For example, one participant wrote, “This website reminds you that you are not the only young person with cancer and you feel less alone. It's also helpful that these fellow cancer patients get what you are going through.”

Worry, sadness, and fear

Almost a third of respondents reported that the website helped decrease their worry (n=10/34; 29%), sadness (n=10/34; 29%), or fear (n=10/34; 29%) about their cancer. In the qualitative responses, these participants stated that the website reduced their worry and sadness by reminding them that other YAs are having similar experiences and are available for support. Approximately half of participants reported that the website did not impact their worry (n=18/34; 53%), sadness (n=19/34; 56%), or fear (n=21/34; 62%) about their cancer.

However, a notable minority of respondents reported an increase in worry (n=6/34; 18%), sadness (n=5/34; 15%), or fear (n=3/34; 9%). Across all participants, 27% (n=9/34) indicated that the website increased their worry, sadness, and/or fear. In particular, respondents reported an increase in these feelings when other website users shared negative treatment outcomes or a cancer recurrence. For example, one participant stated, “It is a little difficult to see when someone has a recurrence. It gives me some anxiety about my own cancer returning.” Another respondent stated, “Sometimes when I hear about other patients not doing well or having a relapse, it makes me feel sad and sometimes guilty for doing well.”

Discussion

The internet provides a developmentally appropriate mechanism for meeting the unmet supportive care needs of YAs with cancer, including the need for peer interaction and support. This paper described the development of a website for YAs with cancer and preliminary data on the website's impact on YA users.

YAs described the overall website as helpful—particularly the social networking functions and the skill-building, clinical services information, health/lifestyle resources, and institute-specific information components. YAs reported using the website as a way to establish connections with peers also undergoing treatment for cancer, and a significant minority reported connecting in-person with YAs they met through the website. This is a positive outcome given that YAs report feeling isolated from their peers during cancer treatment.^3,4

It is important to note that some YAs reported increased distress as a result of using the website. As with all psychosocial services, internet-based services may not be appropriate for all YAs. While reading about the negative experiences of other online participants has been found to disempower individuals with other medical conditions, most studies have not found that online communities increase depression or cause harm to participants.^27,28 Before referring a YA to an internet resource, providers are encouraged to discuss the pros and cons of these resources, including potential exposure to information about other users' disease progression. YAs should be encouraged to make an informed decision—with the assistance of their healthcare provider and support system—regarding the personal appropriateness of online resources. Teaching YAs self-monitoring skills so that they leave a website when distressed may also be helpful. Staff who monitor such a website and provide chat group facilitation need to understand the potential for increased distress and have mental health resources available to address these issues.

Limitations

Limitations of this data include the use of study-specific questions, lack of validated measures of distress, and a small cross-sectional sample. Additional research is needed to understand the longitudinal impact of online resources on YAs' feelings of distress and connectedness. However, this preliminary data suggests that resources such as the described website have strong potential to address the unmet supportive care needs of YAs with cancer.

Practical challenges to the successful development and implementation of a website for YAs with cancer include the cost of creating the website, personnel time to maintain and monitor the website, outreach to and registration of YAs, and sustaining engagement among registered users. Despite these challenges, internet interventions are promising in addressing emotional distress. Future directions include qualitative examination of how patients use the website to promote psychosocial well-being and implementation of internet-based support to increase connections between caregivers of YA cancer patients.

Conclusion

YAs with cancer have unmet supportive care needs. Given the acceptability of the internet as a tool for information and social connection among YAs, websites can function as a method of providing information and support to address unmet needs. Further research is needed to understand the effects of internet-based support on fear, worry, and sadness. However, YA participants in this website found the information, education, and social networking components helpful and experienced increased connection with others.

Disclaimer

Portions of this research were previously presented as an oral abstract at the International Psycho-Oncology Society World Congress of Psycho-Oncology, November 4–8, 2013 in Rotterdam, the Netherlands.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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