Development of a survivorship screening tool in survivors of hematopoietic cell transplant.

PURPOSE: This study describes the development of a screening measure focused on the potential needs of hematopoietic cell transplant (HCT) survivors at least 1-year post-transplant. METHODS: A multidisciplinary team met regularly to develop a screening measure to better understand the ongoing medical and clinical symptoms experienced by survivors of HCT. This measure was given to 299 patients presenting to an HCT survivorship clinic, with referrals offered for any issues reaching clinical threshold. A factor analysis was performed to examine the underlying factor structure of the measure. RESULTS: Analyses indicated a 3-factor underlying structure, including physical, emotional, and practical concerns. Areas most consistently endorsed as ongoing areas of concern included fatigue, financial concerns, and worry about their future. Interestingly, while many patients were interested in referrals for these issues, some patients did not wish to have their symptoms managed at our center. CONCLUSIONS: Survivors of hematopoietic cell transplant continue to experience symptoms well after their treatment has ended, including issues related to the emotional, physical, and practical impact of their illness and treatment regimen. It is vital that their providers understand the frequency of these concerns as well as patients' preference for intervention. IMPLICATIONS FOR CANCER SURVIVORS: While HCT has become increasingly successful in treating hematologic cancers, many survivors experience a range of issues post-transplant. Survivorship care for these patients must include ongoing thorough assessment related to the practical, emotional, and medical symptoms experienced post-transplant, with appropriate intervention provided in-house where possible or in the community according to patient preference.

Survivorship needs of adolescent and young adult cancer survivors: a concept mapping analysis.

PURPOSE: Adolescents and young adults (AYAs) with cancer are known to have complex medical and psychosocial needs throughout treatment; however, information is lacking about the challenges AYA survivors face after treatment has ended. Focus groups were conducted using a concept mapping framework to better understand the most important issues these patients face in transitioning to survivorship and how prepared they felt to face them. METHODS: AYAs diagnosed between 18 and 39 years old and at least 2 years post-treatment participated in one of six focus groups based on age group and follow-up status. Using a concept mapping design, participants provided important issues during the transition to survivorship and appraised them on three core areas of interest. RESULTS: Analyses revealed salient themes shared across age and follow-up group status, particularly related to the psychosocial, emotional, and cognitive effects of treatment. Differential concerns included those related to patients' developmental concerns-namely, finding a new identity, financial burden of treatment, and fertility concerns after treatment. CONCLUSIONS: AYA cancer survivors continue to have a myriad of issues beyond the immediate treatment phase. Despite a complex list of challenges, these issues largely remained unaddressed by their oncology provider and left patients feeling overwhelmingly ill-prepared to manage their transition to survivorship. IMPLICATIONS FOR CANCER SURVIVORS: AYA cancer survivors have many unaddressed concerns as they transition out of active cancer treatment, largely related to developmental issues they are facing. Survivorship care for these patients would benefit from care planning that takes these unique concerns into account.

A Roadmap to Survivorship: Optimizing Survivorship Care Plans for Adolescent and Young Adult Cancer Survivors.

Purpose: Young adult cancer patients have complex medical and psychosocial needs throughout treatment. Once treatment ends, few young adult cancer survivors (YACS) receive adequate survivorship care. Many YACS do not continue with oncology care after treatment ends. The purpose of this study was to discover the views YACS held about survivorship care and to design age-appropriate survivorship care plans (SCPs). Methods: Twenty-seven YACS (n = 27) participated in a group discussion focusing on their post-treatment experience. The concept of SCPs was introduced and participants provided information on how their care was managed after the completion of their treatment, what factors played a role in their oncological follow-up care, and the potential utility of a SCP in the management of their follow-up survivorship care. SCPs were developed for each participant and feedback requested. Results: SCPs required 45-180 minutes to complete. Barriers to continued follow-up included: loss of health insurance, poor communication with their oncologist once treatment ended, and ongoing adjustment challenges to work, school, and home life. YACS requested more support for psychosocial issues post-treatment, and more information about long- and late-term side effects from treatment. Conclusions: Further research in the utility of SCPs among YACS is warranted as they may have a significant role for YACS. Information on long- and late-term side effects, follow-up care schedule, psychosocial support, and adolescent and young adult-specific resources must be clearly delineated in SCPs.

Unsupportive social interactions in the weeks immediately following breast cancer diagnosis.

Unsupportive social interactions (USIs) experienced by people with cancer negatively affect psychological well-being. Forty-five interviews with 26 women were analyzed using directed content analysis to explore USIs experienced during the stressful pretreatment and early postsurgical periods after early-stage breast cancer diagnosis. Cognitive, emotional, and behavioral responses to USIs were also explored. Seventy incidents of USIs were identified within the interviews and grouped into four previously defined and five additional categories. Anxiety, avoiding future interactions, and nondisclosure of thoughts and feelings were typical responses to USIs. These responses hold implications for women's psychological well-being and need for future interventions and research.

Exploring the first days of adjustment to cancer: a modification of acclimating to breast cancer theory.

BACKGROUND: Psychological adjustment may not be achieved by some women even years after breast cancer diagnosis. Although level of adjustment to diagnosis in the earliest (pretreatment) period is associated with future adjustment, limited research has explored this early period. Greater knowledge of women's thoughts and behaviors as adjustment is initiated is needed to target interventions for women at risk for future adjustment problems. OBJECTIVES: This study was intended to expand what is known about the pretreatment experiences, thought processes, and behaviors of women diagnosed with breast cancer and further define concepts and increase the scope of Acclimating to Breast Cancer, a grounded theory of adjustment in the pretreatment period. METHODS: Forty-five semistructured interviews were conducted with 26 women prior to and again within 30 days after breast cancer surgery. Women were 39 to 81 years old with stage 0 to stage II disease and primarily varied from the original sample geographically and on length of, and care coordination during, the pretreatment period. A multidisciplinary team performed directed content analysis, comparing new data to the original theory. RESULTS: Although generally consistent with the original theory, findings contributed to renaming 1 and adding 2 theory categories plus expanding 7 of 8 existing categories. Additional personal and situational influences on the process were identified. CONCLUSION: The grounded theory of Acclimating to Breast Cancer was modified with new data from women currently experiencing the pretreatment period following diagnosis. IMPLICATIONS FOR PRACTICE: This theory modification provides a framework to guide needed assessment, psychoeducation, and research aimed at supporting psychological adjustment during the pretreatment period.