Much attention has been given to implementing routine screening programs in cancer care to improve the management of distress following diagnosis. Although patients might screen positive for distress, several studies have found that most then refuse additional psychosocial support. To inform the development of successful models of distress screening, this qualitative study explored preferences for psychosocial care among 18 women diagnosed with a gynecologic cancer who scored at least 4 on the Distress Thermometer (DT). Participants were recruited from a gynecologic oncology outpatient clinic in Newcastle, Australia, and interviewed. Unanimously, participants felt that completing the DT was an integral part of their cancer care. However, half then refused the referral to see a psychologist. These women typically reported that a referral was not needed, because their rating on the DT reflected transient stressors or physical distress. Many also spoke about their need to cope with the challenges they were facing on their own and the extensive social support they already had in place to help them overcome these challenges. In contrast, women who accepted referral to the psychologist often struggled to cope with several losses they felt had existential and long-term effects. Commonly, these women reported not having the social support they needed, managing several concurrent life stressors, and/or not having the repertoire of coping skills they required to “remain afloat.” Findings from this study begin to bridge the gap between clinicians’ and patients’ expectations of how psychosocial services should be used in response to distress screening.
Sylvie D. Lambert, Brian Kelly, Allison Boyes, Alexander Cameron, Catherine Adams, Anthony Proietto and Afaf Girgis
Christina Signorelli, Claire E. Wakefield, Karen A. Johnston, Joanna E. Fardell, Jordana K McLoone, Mary-Ellen E. Brierley, Maria Schaffer, Elysia Thornton-Benko, Afaf Girgis, W. Hamish Wallace, Richard J. Cohn and on behalf of the BSU Implementation Group
Background: Survivors of childhood cancer often experience treatment-related chronic health conditions. Survivorship care improves survivors’ physical and mental health, yet many are disengaged from care. Innovative models of care are necessary to overcome patient-reported barriers to accessing survivorship care and to maximize survivors’ health. Methods: We piloted a novel survivorship program, called “Re-engage,” a distance-delivered, nurse-led intervention aiming to engage, educate, and empower survivors not receiving any cancer-related care. Re-engage involves a nurse-led consultation delivered via telephone/online to establish survivors’ medical history and needs. Participants completed questionnaires at baseline, 1 month postintervention, and 6-month follow-up. Results: A total of 27 survivors who had not accessed survivorship care in the last 2 years participated (median age, 31 years; interquartile range [IQR], 27–39 years); of which, 82% were at high-risk for treatment-related complications. Participation in Re-engage was high (75%) and there was no attrition once survivors enrolled. At 1 month postintervention, 92% of survivors reported that Re-engage was “beneficial,” which all survivors reported at 6-month follow-up. Survivors’ overall satisfaction with their care increased from 52% before Re-engage to 84% at 1 month postintervention. Survivors’ mean self-efficacy scores remained similar from baseline to 1 month postintervention (b = −0.33, 95% CI, −1.31 to 0.65), but increased significantly from baseline to 6-month follow-up (b = 1.64, 95% CI, 0.28–3.00). At 6-month follow-up, 73% of survivors showed an increase in health-related self-efficacy compared with baseline. Conclusions: Re-engage is a highly acceptable and feasible intervention and promotes health-related self-efficacy, which is integral to survivors being advocates for their own health. Further empirical work is needed to evaluate the long-term efficacy of Re-engage.
Trial registration: ACTRN12618000194268