Abstract
Social reintegration is an important part of young adult cancer patients' transition to survivorship care. As part of a mixed methods study exploring the social functioning of young adult cancer patients during this transition process, participants (N = 13) completed four selected measures from the Patient-Reported Outcomes Measurement Information System (PROMIS) social and mental health domains within ∼6 months of completion of active treatment and 3 months later. The majority of participants (n = 10) had T-scores within normal limits on all measures. Three participants had T-scores in the mild or moderate impairment range across time points. No significant differences were found between groups at Time 1 and Time 2 on any of the four measures.
Keywords: patient-reported outcomes measures, social functioning, transition, survivorship
Introduction
During transition to the post-treatment phase of cancer survivorship, young adult cancer patients are navigating changes in their social identity and social reintegration with their peers. Social competence is one of the key transition issues that should be addressed with adolescent and young adult (AYA) cancer patients.1 Understanding the social functioning of AYAs over time is needed to help identify patients who remain at risk of poor outcomes and to assess what services are needed.2 The measurement and assessment of social health is complex and requires thoughtful consideration of the associations between sociodemographic, clinical, and behavioral factors.3 The Patient-Reported Outcomes Measurement Information System (PROMIS) social health framework has two primary sub-domains: social function (including some distinction between capability and satisfaction) and social relationships (including concepts of social support and isolation).3 The PROMIS measures may be used for both research and clinical purposes. Among AYAs with cancer, the PROMIS Global Health Scale has been piloted successfully in the outpatient setting at the point-of-care to augment the clinical evaluation.4
This study piloted the use of four selected measures from the PROMIS social and mental health domains with young adult cancer patients as part of a larger mixed methods study exploring the social functioning of young adult cancer patients during the transition from active treatment to survivorship care.5 Two research questions guided this analysis. First, we wanted to examine if young adult cancer patients in the process of completing active treatment experienced social isolation, impairment in their ability to participate in social roles and activities, satisfaction with social roles and responsibilities, and/or reduced self-efficacy for managing social interactions. Second, we wanted to assess if there were significant changes on measures of social isolation, ability to participate in social roles and activities, self-efficacy for managing social interactions, and satisfaction with social roles and activities between the completion of active treatment and ∼3 months later.
Methods
Thirteen YAs were recruited for this study over a period of ∼5 months (from June 2017 to November 2017) from a pediatric (n = 9) and adult (n = 4) academic medical center on the West Coast. The eligibility criteria for study participation included being treated for cancer at either the pediatric or adult academic medical center in which this study was conducted, diagnosis with cancer between the ages of 18–25 years old, and being within ∼6 months of completion of active treatment at the time of study enrollment (as determined by the referring health care provider). One study participant who was diagnosed with cancer 1 week before his 18th birthday was included in the study. Two patients declined participation in the study. Exclusion criteria included diagnosis of brain tumor and transition to end-of-life care. The institutional review board approved this study and informed consent was obtained from all study participants. Demographic information was collected through self-report from all study participants at the initial study visit (Table 1).
Table 1.
Participant Sociodemographics (N = 13)
| n (%) | M (SD) | Range | |
|---|---|---|---|
| Age (in years) at the time of cancer diagnosis | 21.23 (2.86) | 17–25 | |
| Age (in years) at the time of study participation | 22.46 (2.54) | 19–27 | |
| Gender | |||
| Male | 7 (53.85) | ||
| Female | 6 (46.15) | ||
| Race/ethnicity | |||
| Hispanic/Latino | 4 (30.77) | ||
| Caucasian/non-Hispanic white | 4 (30.77) | ||
| Asian/Pacific Islander | 3 (23.08) | ||
| Non-Hispanic white and Asian/Pacific Islander | 2 (15.38) | ||
| Educational attainment (at time of initial interview) | |||
| Some college/associate degree | 5 (38.46) | ||
| College graduate or higher | 4 (30.77) | ||
| High school graduate or less | 4 (30.77) | ||
| Cancer diagnosis | |||
| Acute lymphoblastic leukemia | 4 (30.77) | ||
| Testicular cancer | 2 (15.38) | ||
| Hodgkin lymphoma | 2 (15.38) | ||
| Acute myeloid leukemia | 1 (7.69) | ||
| Non-Hodgkin lymphoma | 1 (7.69) | ||
| Wilms' tumor | 1 (7.69) | ||
| Rhabdomyosarcoma | 1 (7.69) | ||
| Ewing sarcoma | 1 (7.69) | ||
| Treatment received | |||
| Chemotherapy and radiation | 7 (53.85) | ||
| Chemotherapy, surgery, and radiation | 2 (15.38) | ||
| Chemotherapy | 2 (15.38) | ||
| Chemotherapy and surgery | 2 (16.38) | ||
| Health insurance status at the time of cancer diagnosis | |||
| Insured | 10 (76.92) | ||
| Uninsured | 3 (23.08) | ||
The PROMIS is a set of person-centered measures that evaluates and monitors physical, mental, and social health in children and adults.6 The following four PROMIS measures were selected from the social and mental health domains for adults and administered to all study participants at both study time points: Satisfaction with Social Roles and Activities—short form 8a (v2.0), Ability to Participate in Social Roles and Activities—short form 8a (v2.0), Social Isolation—short form 8a (v2.0), and Self-Efficacy for Managing Social Interactions—short form 8a (v1.0). Study participants (N = 13; ages 17–25 at the time of cancer diagnosis; ages 19–27 at the time of study consent) completed the supplemental self-report questionnaires upon conclusion of a qualitative interview. During the initial study visit, participants completed the paper questionnaires in-person at the time of study participation (n = 11) or electronically after the visit by Qualtrics survey (n = 2). For the 3-month follow-up, the majority of participants (n = 9) completed the measures electronically through Qualtrics and the other participants (n = 3) completed the measures on paper. Active patient engagement and rapport building with qualitative methods helped to encourage sustained data collection of the patient-reported outcome measures across both study time points.7
All questionnaire data was labeled using unique participant ID numbers and managed using SPSS Version 24 and Excel. Descriptive statistics were computed for participant sociodemographic characteristics. The internal consistency of the PROMIS measures was checked at both time points using Cronbach's alpha. At Time 1, all four measures demonstrated good internal consistency: PROMIS Ability to Participate in Social Roles and Activities (α = 0.92), PROMIS Social Isolation (α = 0.94), PROMIS Satisfaction with Social Roles and Activities (α = 0.95), and PROMIS Self-Efficacy for Managing Social Interactions (α = 0.80). At Time 2, all measures demonstrated good internal consistency: PROMIS Ability to Participate in Social Roles and Activities (α = 0.95), PROMIS Social Isolation (α = 0.88), PROMIS Satisfaction with Social Roles and Activities (α = 0.95), and PROMIS Self-Efficacy for Managing Social Interactions (α = 0.82).
A missing data value analysis was conducted at both time points. Raw scores were saved in Excel files and submitted to the HealthMeasures Scoring Service. The HealthMeasures Scoring Service provided calculated T-scores for all participants. On the measures of satisfaction with social roles and activities, ability to participate in social roles and activities, and self-efficacy for managing social interactions, a higher T-score means more of the concept being measured. On the measure of social isolation, a higher T-score means greater symptom impairment (e.g., more social isolation). Descriptive statistics for the survey measures were calculated using the participant T-scores at both time points. To examine if participants were experiencing impairment on any of the four measures of social functioning, categorical variables were created to compute the percentage of participant T-scores within each range (e.g., within normal limits, mild impairment, moderate impairment, or severe impairment) on each measure. To examine if there were any significant differences between groups in participant T-scores at Time 1 and Time 2 on any the four measures, the Wilcoxon signed rank test was computed.
Results
Time 1
All study participants (N = 13) were administered Time 1 questionnaires. One participant (P01) had >20% missing data on the Time 1 questionnaires and was excluded from Time 1 analyses. All other study participants (n = 12) answered all items on all four questionnaires at Time 1. Participant T-scores were used to calculate scale descriptives (Table 2). The PROMIS Self-Efficacy for Managing Social Interactions measure had the lowest mean (M = 46.33, SD = 7.93), followed by PROMIS Ability to Participate in Social Roles and Activities (M = 47.89, SD = 6.60), PROMIS Satisfaction with Social Roles and Responsibilities (M = 49.18, SD = 8.81), and PROMIS Social Isolation (M = 49.41, SD = 9.06). Participant T-scores for all four measures were received from the HealthMeasures Scoring Service and were categorized according to the T-score ranges (Table 2). About half (58.4%) of participants had mild (n = 5) or moderate (n = 2) impairment on the PROMIS Self-efficacy Efficacy for Managing Social Interactions measure. On the other three measures, the majority of participants had T-scores within normal limits. Three participants had scores suggesting mild or moderate impairment across measures of social functioning.
Table 2.
PROMIS Self-Report Measures Descriptives: Time 1
| Time 1 (n = 12) | |||
|---|---|---|---|
| M (SD) | Range | n (%) | |
| Self-efficacy for managing social interactions | 46.33 (7.93) | 34.60–59.80 | |
| Normal | 5 (41.7) | ||
| Mild | 5 (41.7) | ||
| Moderate | 2 (16.7) | ||
| Severe | 0 | ||
| Ability to participate in social roles and activities | 47.89 (6.60) | 36.90–58.20 | |
| Normal | 9 (75.0) | ||
| Mild | 0 | ||
| Moderate | 3 (25.0) | ||
| Severe | 0 | ||
| Satisfaction with social roles and activities | 49.18 (8.81) | 36.60–60.70 | |
| Normal | 7 (58.3) | ||
| Mild | 2 (16.7) | ||
| Moderate | 3 (25.0) | ||
| Severe | 0 | ||
| Social isolation | 49.41 (9.06) | 34.00–64.70 | |
| Normal | 10 (83.3) | ||
| Mild | 1 (8.3) | ||
| Moderate | 1 (8.3) | ||
| Severe | 0 | ||
Time 2
One study participant died in the interim between Time 1 and Time 2. All other study participants (n = 12) were emailed the same four PROMIS questionnaires through Qualtrics survey at Time 2. One participant (P01) skipped a few items on the follow-up questionnaires, but since she answered at least four items (out of 8) on every questionnaire, her data could be included in this analysis. All other participants answered all items on all four questionnaires.
Participant T-scores were used to calculate scale descriptives (Table 3). The PROMIS Self-efficacy for Managing Social Interactions measure had the lowest mean (M = 47.22, SD = 7.78), followed by PROMIS Ability to Participate in Social Roles and Activities (M = 48.53, SD = 6.81), PROMIS Social Isolation (M = 49.06, SD = 5.49), and PROMIS Satisfaction with Social Roles and Responsibilities (M = 51.03, SD = 7.52). Across all four measures, the majority of study participants had T-scores that were within normal limits. Three participants had scores suggesting mild or moderate impairment across measures of social functioning.
Table 3.
PROMIS Self-Report Measures Descriptives: Time 2
| Time 2 (n = 12) | |||
|---|---|---|---|
| M (SD) | Range | n (%) | |
| Self-efficacy for managing social interactions | 47.22 (7.78) | 36.00–59.80 | |
| Normal | 8 (66.7) | ||
| Mild | 1 (8.3) | ||
| Moderate | 3 (25.0) | ||
| Severe | 0 | ||
| Ability to participate in social roles and activities | 48.53 (6.81) | 39.30–58.00 | |
| Normal | 8 (66.7) | ||
| Mild | 2 (16.7) | ||
| Moderate | 2 (16.7) | ||
| Severe | 0 | ||
| Social isolation | 49.06 (5.49) | 42.20–59.80 | |
| Normal | 10 (83.3) | ||
| Mild | 2 (16.7) | ||
| Moderate | 0 | ||
| Severe | 0 | ||
| Satisfaction with social roles and activities | 51.03 (7.52) | 38.00–65.10 | |
| Normal | 9 (75.0) | ||
| Mild | 2 (16.7) | ||
| Moderate | 1 (8.3) | ||
| Severe | 0 | ||
Comparison of T-scores between Time 1 and Time 2
The Wilcoxon signed rank test was computed to assess if there were any significant differences between groups at Time 1 and Time 2 on any of the four measures. Participants who had complete data at both time points (n = 11) were able to be included in this analysis. No significant differences were found between groups across time points. There was a median increase in participation in social roles and activities from Time 1 (Mdn = 48.70) to Time 2 (Mdn = 49.35), but this difference was not statistically significant, z = −0.77, p = 0.443. There was a median decrease in satisfaction with social activities from Time 1 (Mdn = 51.40) to Time 2 (Mdn = 50.55), but this difference was not statistically significant, z = −0.45, p = 0.656. There was a median increase in self-efficacy for managing social interactions from Time 1 (Mdn = 44.05) to Time 2 (Mdn = 47.80), but this difference was not statistically significant, z = −0.46, p = 0.646. There was a median decrease in social isolation from Time 1 (Mdn = 49.00) to Time 2 (Mdn = 47.05), but this difference was not statistically significant, z = −1.17, p = 0.241.
Discussion
AYAs experience frequent disruptions in their social roles and activities during cancer treatment. AYAs report ongoing challenges with maintaining or making new friendships post-treatment.8 In this small sample of young adult cancer patients in the process of completing active treatment, the majority of participants (n = 10) scored within normal limits on generalized measures of social isolation, ability to participate in social roles and activities, satisfaction with social roles and responsibilities, and self-efficacy for managing social interactions. The subset of participants (n = 3) who had scores in the impaired range across measures of social functioning described challenges with managing physical complications from treatment (e.g., stroke and arteriovenous malformation), mental health concerns (e.g., anxiety and depression), and/or social isolation due to distance traveled to receive treatment. This is consistent with recent research examining the relationship between psychological adjustment (e.g., depression, anxiety, and post-traumatic stress symptoms) and social well-being, as well as research suggesting associations between physical symptom impairment and low social functioning over time.2,9
Regarding the examination of potential changes in social isolation, ability to participate in social roles and activities, self-efficacy for managing social interactions, and satisfaction with social roles and activities between the completion of active treatment and ∼3 months later, no significant differences were found between groups in participant T-scores at Time 1 and Time 2. A larger sample size is needed to enhance the generalizability of the findings. Assessing for potential changes in social functioning at an additional time point, such as at 1 year post-treatment might also yield further information. Since the selected PROMIS measures are not cancer or AYA specific, they are less likely to capture the nuanced social concerns that young adult cancer patients discussed during study interviews, such as changes in body image and concerns about disclosing their cancer diagnosis to their peers.
Conclusions
Although a larger sample size is needed to more fully assess the use of the selected PROMIS measures with young adult cancer patients in examining their social functioning during the transition to survivorship care, these findings suggest that generalized measures of social functioning were within normal limits for most young adults in this sample at the time points assessed. The patients in this sample who experienced impairments in social functioning also described physical complications from treatment, mental health concerns, and/or social isolation due to distance traveled to receive treatment. These findings support screening for the social functioning of AYAs during the transition to survivorship care to identify patients who may need additional support and to provide referrals to age-appropriate resources as needed. Further research is recommended to adapt patient-reported outcome measures of social functioning for AYA cancer patients.
Acknowledgments
The authors thank all the participants for sharing their time and experiences. The authors also express their appreciation for the publicly available use of the PROMIS measures. C.W. was supported by an American Cancer Society—Joe & Jessie Crump Foundation Medical Research Fund Training Grant (DSW-16-246-01-SW). C.W. is currently supported by an NIH/NCI 5T32 CA092408. J.C.-M. is supported by an American Cancer Society—Joe & Jessie Crump Foundation Medical Research Fund Training Grant (DSW-16-247-01-SW). B.J. is supported by a Palliative Care Research Cooperative Group (PCRC) Pilot Grant.
Author Disclosure Statement
No competing financial interests exist.
References
- 1. Nathan PC, Hayes-Lattin B, Sisler JJ, Hudson MM. Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer. 2011;117(10 Suppl):2335–41 [DOI] [PubMed] [Google Scholar]
- 2. Husson O, Zebrack BJ, Aguilar C, et al. Cancer in adolescents and young adults: Who remains at risk of poor social functioning over time? Cancer. 2017;123(14):2743–51 [DOI] [PubMed] [Google Scholar]
- 3. Hahn EA, Devellis RF, Bode RK, et al. Measuring social health in the patient-reported outcomes measurement information system (PROMIS): item bank development and testing. Qual Life Res. 2010;19(7):1035–44 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4. Henderson JR, 2nd, Kiernan E, McNeer JL, et al. Patient-reported health-related quality-of-life assessment at the point-of-care with adolescents and young adults with cancer. J Adolesc Young Adult Oncol. 2018;7(1):97–102 [DOI] [PubMed] [Google Scholar]
- 5. Walsh C, Currin-McCulloch J, Simon P, et al. Shifting needs and preferences: supporting young adult cancer patients during the transition from active treatment to survivorship care. J Adolesc Young Adult Oncol. 2019;8:114–121 [DOI] [PubMed] [Google Scholar]
- 6. HealthMeasures. List of adult measures. Accessed April15, 2019 from www.healthmeasures.net/explore-measurement-systems/promis/intro-to-promis/list-of-adult-measures 2019
- 7. Rosenberg AR, Bona K, Wharton CM, et al. Adolescent and young adult patient engagement and participation in survey-based research: a report from the “Resilience in Adolescents and Young Adults With Cancer” Study. Pediatr Blood Cancer. 2016;63(4):734–6 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8. Warner EL, Kent EE, Trevino KM, et al. Social well-being among adolescents and young adults with cancer: A systematic review. Cancer. 2016;122(7):1029–37 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9. Sinnott SM, Park CL. Social well-being in adolescent and young adult cancer survivors. J Adolesc Young Adult Oncol. 2019;8(1):32–9 [DOI] [PubMed] [Google Scholar]