Pilot Use of Selected Measures from the Patient-Reported Outcomes Measurement Information System Social and Mental Health Domains with Young Adult Cancer Patients During the Transition to Survivorship Care

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).

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

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.