Abstract
Adolescent and young adult (AYA) patients with cancer have few opportunities to interact with peers in their lives. To meet peers safely during the coronavirus disease 2019 (COVID-19) pandemic, a hospital-based online patients support program called Online AYA Hiroba was launched for AYA patients with cancer and held regularly by the National Cancer Center Hospital in Japan. This retrospective study suggested the degree of satisfaction with this program and issues about facilitating the sessions that are unique to the online environment. Our findings potentially contribute to the establishment of a hospital-based online patients support program for AYA patients with cancer at other hospitals.
Introduction
More than 20,000 adolescent and young adult (AYA) patients are newly diagnosed with cancer each year, 1 representing ∼2.3% of all people diagnosed with cancer in Japan. Various clinical departments provide medical care for these patients because there are few AYA patients with cancer at each designated cancer center and the primary cancer site varies. 2 Although AYA patients with cancer have reported that the opportunity to meet and receive support from other survivors of a similar age is more important than the support they receive from family and friends, 3 these patients have few opportunities to interact with patients in same generation in their daily lives.
The National Cancer Center Hospital (NCCH) is a high-volume cancer center that treats >1000 AYA patients with newly diagnosed cancer each year. An in-hospital patients support program for AYA patients with cancer named AYA Hiroba was launched in 2016. It is operated by the AYA support team consisting of multidisciplinary experts. Hiroba originally means the place or space to gather in Japanese.
From October 2017 to March 2020, AYA Hiroba was held 30 times in a face-to-face format and a cumulative total of 161 patients participated. 4 However, AYA Hiroba was interrupted owing to the coronavirus disease 2019 (COVID-19) pandemic. Holding sessions in a face-to-face format is associated with the potential risk of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) transmission because patients gather and talk in close proximity.
For safety reasons during the COVID-19 pandemic, AYA Hiroba has been held online since June 2020. Online peer support is reported to have positive effects such as lower prevalence of depression and perceived stress for patients with cancer.5–8 An online AYA community reportedly helped AYA patients with cancer express feelings, exchange information, exchange peer support, and cope with cancer. 9
NCCH's hospital-based online patients support program called Online AYA Hiroba provides online get-together opportunities for AYA patients with cancer. The purpose of this retrospective study was to investigate the degree of satisfaction and issues with the online patients support program for AYA patients with cancer at a designated cancer center in Japan.
Methods
Online AYA Hiroba content
Online AYA Hiroba and AYA Hiroba have essentially the same content. 4 Two facilitators from the AYA support team participate in each session. Table 1 provides the facilitator's manual unique to online sessions based on actual operations. This program was held monthly for 1 hour (3 p.m. to 4 p.m.). Participants consisted of AYA patients with cancer aged 15 to 39 years who are inpatients or outpatients at NCCH. Patients who participate in the program may talk freely about any theme they wish. Participation rules are as follows: (1) “You will never be forced to talk about anything you do not feel comfortable sharing with other participants,” (2) “Do not disclose anything you heard or learned from this program,” and (3) “Do not criticize other participants' opinions. Show respect.”
Manual for Facilitators
AYA, adolescent and young adult; NCCH, National Cancer Center Hospital.
Retrospective study
This study was retrospective study of medical records and questionnaires that were clinically conducted at the end of each session of Online AYA Hiroba from June 2020 to September 2021.
Information collected in the questionnaire included: (1) participation experience (first time or not), (2) thoughts about program timing, (3) thoughts about program duration, (4) thoughts about program frequency, (5) desire to participate again, (6) Net Promoter Score (NPS), (7) whether the program met expectations (0–10 points), (8) opinions about the content (0–10 points), (9) whether the program helped the participant cope with cancer (0–10 points), (10) satisfaction with the online program, and (11) whether it is easier to attend sessions online versus face-to-face. In addition to these questions, a free-text field for impressions and issues about the program was included.
NPS, 10 a single item measure of consumer satisfaction, was used to assess trial performance across conditions. NPS has been used as an overarching measure of patient experience with health care delivery. Patients were asked, “How likely would you recommend taking part in this program to another patient like you?” Participants with scores of 0–6 were considered detractors; 7–8, passive; and 9–10, promoters.
Participant characteristics were collected from medical records retrospectively. Information included age, gender, treatment type (outpatient or inpatient), cancer type, cancer stage, and treatment setting.
This study was approved by the NCCH ethics committee (approval number, 2019-215) and conducted in accordance with the principles of the Declaration of Helsinki. The requirement for informed consent was waived owing to the retrospective design, and opt-out information was published on the NCCH website.
Analysis
Descriptive statistics were used to evaluate participant demographics. Simple tabulation was performed for the 10 question items, except for (6) NPS. For NPS, the percentage of promoters minus the percentage of detractors was calculated. NPS could range between −100 and 100. To respect the valuable opinions of the participants, all results of the questionnaire were analyzed.
Differences in survey responses for question items (2) to (5) by the participation experience (first time or not) were compared using the chi-square test. Differences in survey responses to items (7) to (11) by the participation experience (first time or second time) were compared using the paired t-test. The free-text descriptions were classified based on similarities and differences.
Results
From June 2020 to September 2021, Online AYA Hiroba was held 16 times. A total of 23 patients participated. On average, there were 2.9 participants at each session (a cumulative total of 47 participants). Characteristics of the respondents attending for the first time are given in Table 2.
Characteristics of the Participants
NUT, nuclear protein of the testis.
Based on the questionnaire responses (Table 3), 31 (66.0%) participants thought that it was easy to participate during the hours of 3 p.m. to 6 p.m. and 42 (89.4%) participants reported that they wanted to participate in 1-hour sessions. Twenty-eight (59.6%) participants answered that they want to participate once a month. The proportion of participants who responded as described above was significantly higher among those participating multiple times than among first-time participants. Forty-three (91.5%) participants answered that they want to attend the program again.
Questionnaire Answers
NA, not applicable; NPS, Net Promoter Score; SD, standard deviation.
NPS was 52, 71, and 62 for respondents attending for the first time, multiple times, and total times, respectively. There were no significant differences in survey responses to question items (7) to (11) between first-time and second-time among 9 participants attending multiple times.
Regarding free-text responses, discussion topics for the future were classified into four categories: physical problems, social problems, relationships and communication, and other. The opinions they requested or suggested for improving this program were classified into three categories: content, facilitation, and online connection environment. Requests and suggestions for improving this program were classified into four categories: content, format, online connection environment, and other.
Discussion
This study was the first about a hospital-based online patients support program for AYA patients with cancer at a designated cancer center in Japan. The study has two strengths. First, this retrospective study identified the needs and challenges of a hospital-based online patients support program for AYA patients with cancer. Second, the hospital-based online patients support program we created could be a model for other hospitals.
The average number of participants and clinical characteristics of the participants (Table 2) were compared with data from the face-to-face AYA Hiroba program. 4 Ease of access is one advantage of the online program. For face-to-face sessions, participants need to be hospitalized or go to the hospital on the day of the event, but for online sessions, they can participate from their home or anywhere they like. Furthermore, the AYA generation in Japan has a high internet utilization rate with smartphones or personal computers. 11 However, the average number of participants per session decreased from 5.4 with the face-to-face format to 2.9 with the online format. It is necessary to verify the factors that make it difficult for AYA patients with cancer to participate online.
Although adolescents and young adults have reported that they have high digital communication needs, 12 adolescents did not participate in this online program. It is necessary to verify the factors that make it difficult for adolescents to participate and identify ways to recruit them.
Men participated more than women, which is different from the results of previous online support studies in other countries.9,13,14 According to the Cancer Registry of Japan, there are more female than male patients with cancer older than 20 years of age and 80% of patients with cancer aged 20–39 years are women. 15 This result suggests that Japanese men are more likely to participate in online patients support program. With the face-to-face format, women had a higher participation rate and men seemed to have less need for patients support program. However, if access is improved with an online format, it will be easier for men to participate, and men might in fact have previously unrecognized needs for patients support program. This finding might lead to male cancer peer support care for the AYA generation.
Inpatients participated more than outpatients. This finding was thought to be owing to the relative ease of accessing information about the program. In addition, recruitment of outpatients was challenging.
There were patients with various cancer types, including rare cancers, who participated, reflecting the various cancer types in the AYA generation.1,2,16 The proportion of patients with stage IV cancer was high. The online format allowed patients with progressive cancer who have restricted mobility to meet peers. 17
Most participants were undergoing treatment because they had easier access to information about the program. Providing patients support program to long-term survivors and posttreatment patients is another issue to address in the future.
Based on responses to the questionnaire (Table 3), the need for this program is high and the format of this program is generally appropriate because evaluations such as NPS or other items remained at a high level even after multiple sessions.
On the contrary, this program faced two main challenges. The first challenge was facilitation challenges unique to the online format. Unlike the face-to-face format, it was difficult for participants to grasp the timing of speaking. The facilitator needed to actively ask participants to speak in the appropriate order. Furthermore, facilitators needed to make big gestures, reactions (e.g., nodding, empathizing, laughing, or being surprised), and actively use the reaction emojis in Zoom, and to encourage participants to do so as well because it was difficult to understand reactions (positive or negative) to the discussion. It was important to give some brief feedback after the participant's remarks to move on to the next participant. The second challenge was the online connection environment. To provide a stable program, at a minimum, the online connection environment on the operating side must be stable. For participants in the hospital, it is also necessary to provide a wireless environment in the hospital and tablets.
This study has several limitations. First, it was a single-center retrospective study with a small number of participants. It might be difficult to generalize these results to other facilities. Second, the effect of the online patients support program in terms of satisfaction and usefulness could not be measured using validated scales or instruments other than NPS. Further prospective studies are needed to evaluate the effect of the online patients support program on satisfaction and usefulness using validated scales or instruments. Finally, this program is intended only for NCCH patients. The online program can be implemented for a wide range of outpatients. However, it is difficult to identify whether an outpatient is really a patient with cancer or a member of the AYA generation with the current system.
Despite these limitations, our findings can potentially contribute to the establishment of a hospital-based online patients support program for AYA patients with cancer at other hospitals. To increase opportunities for AYA patients with cancer to interact with peers in their lives and improve their quality of life, we intend to further develop this program.
Conclusion
This study suggested the degree of satisfaction and issues for Online AYA Hiroba, a hospital-based online patients support program for AYA patients with cancer. Further evaluation and the establishment of an online patients support program for AYA patients with cancer that could be held at other hospitals are needed.
Footnotes
Acknowledgments
The authors thank all members of the AYA support team at NCCH, Tomoko Mizuta (Department of Psycho-Oncology, NCCH), and all AYA patients with cancer who participated in this study.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
This study was supported by the National Cancer Center Research and Development Fund (2021-A-14), Japan Society for the Promotion of Science KAKENHI (Grant No. JP 20K16566), Project Mirai Cancer Research Grants, and funding from the Foundation for Promotion of Cancer Research in Japan.
