NCCN Guidelines® Insights: Distress Management, Version 2.2023.

These NCCN Guidelines for Distress Management discuss the identification and treatment of psychosocial problems in patients with cancer. All patients experience some level of distress associated with a cancer diagnosis and the effects of the disease and its treatment regardless of the stage of disease. Clinically significant levels of distress occur in a subset of patients, and identification and treatment of distress are of utmost importance. The NCCN Distress Management Panel meets at least annually to review comments from reviewers within their institutions, examine relevant new data from publications and abstracts, and reevaluate and update their recommendations. These NCCN Guidelines Insights describe updates to the NCCN Distress Thermometer (DT) and Problem List, and to the treatment algorithms for patients with trauma- and stressor-related disorders.

Distress Management, Version 3.2019, NCCN Clinical Practice Guidelines in Oncology.

Distress is defined in the NCCN Guidelines for Distress Management as a multifactorial, unpleasant experience of a psychologic (ie, cognitive, behavioral, emotional), social, spiritual, and/or physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment. Early evaluation and screening for distress leads to early and timely management of psychologic distress, which in turn improves medical management. The panel for the Distress Management Guidelines recently added a new principles section including guidance on implementation of standards of psychosocial care for patients with cancer.

Adjustment to Acute Leukemia: The Impact of Social Support and Marital Satisfaction on Distress and Quality of Life Among Newly Diagnosed Patients and Their Caregivers.

Little is known about the specific patterns of adjustment among newly diagnosed acute leukemia patients and their caregivers. This study examined the trajectories of patient and caregiver distress over time as well as the extent to which marital satisfaction and social support moderated these trajectories among those with significant-other caregivers. Forty six patient-caregiver dyads provided ratings at four time points: within 1 week of diagnosis (T1), 2 week follow-up (T2), 6 week follow-up (T3) and 12 week follow-up (T4). As anticipated, patients and caregivers reported higher levels of distress around the time of diagnosis than they did during subsequent time points. Marital satisfaction was a significant predictor of distress among patients, whereas among caregivers, social support predicted distress and quality of life. Results support the inclusion of relational variables such as social support and relationship satisfaction in the assessment of newly diagnosed patients and families in order to best identify those at risk for distress over time.

Acceptability, feasibility, and efficacy of a supportive group intervention for caregivers of newly diagnosed leukemia patients.

This study describes the development of a supportive group-based intervention for family caregivers of newly diagnosed leukemia patients. We assessed the feasibility, acceptability, and efficacy of the group on caregiver distress and quality of life, as well as patient distress utilizing a sequential cohort design comparing a pre-intervention control group with the intervention group. Patients and caregiver dyads completed measures at 4 time points: within 1 week of diagnosis (T1), 2-week follow-up (T2), 6-week follow-up (T3), and 12-week follow-up (T4). Significant interaction effects were observed for both caregiver distress and quality of life, whereby those receiving the intervention demonstrated improved quality of life and reduced distress over time. Overall, results support the acceptability, feasibility, and preliminary efficacy of the group intervention.

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.

Adolescent depression: views of health care providers in a pediatric emergency department.

OBJECTIVE: Pediatric emergency department (PED) providers are strategically positioned to identify adolescents with depression. Our objectives were to describe health care providers' perspectives on adolescent depression and the role of depression screening in the PED. METHODS: We conducted semistructured interviews with 41 health care providers from an urban, academic PED (including PED attending physicians and trainees, social workers, and psychiatrists). Interviews were audiotaped, transcribed, and entered into the N6 qualitative data analysis software version 6 (QSR International Pty Ltd, Cambridge, Mass) for coding and analysis. A multidisciplinary team used content analysis to identify 2 primary domains: (1) provider attitudes about adolescent depression and (2) factors associated with adolescent depression screening processes in a PED setting. RESULTS: The PED-based providers demonstrated a clear understanding of the clinical burden of adolescent depression but described complex individual and system-level barriers to addressing the issue. All providers recognized the high prevalence of adolescent depression and its impact on health and described adolescent depression as a moderate-to-large problem that was greatly underrecognized but applied primarily a biomedical model for treatment options. The respondents endorsed computerized screening as a useful approach. Concerns were raised universally regarding the ability of the health care system to respond to screened adolescents found to be depressed. CONCLUSIONS: The study describes the perspectives of multiple, key stakeholders necessary for a system response to the identification, assessment, and management of adolescent depression in the PED. The PED providers were generally supportive of computerized depression screening in the PED setting but also voiced the need for system-level responses that facilitate access to quality mental health care services for adolescents.

The Photographs of Meaning Program for Pediatric Palliative Caregivers and Its Impact on Meaning, Well-Being, and Perceived Social Support.

Background: Caring for a child or adolescent with palliative care needs can significantly influence the physical, mental, financial, and social well-being of caregivers. Due to this multifaceted impact, there is a demand for evidence-based support that meets the distinct needs of this population. Objective: This study aims to evaluate the effect the Photographs of Meaning Program (POM) has on meaning and purpose, well-being, and perceived social support of pediatric palliative caregivers (PPCGs). Design: Over an eight-week period, participants followed a meaning-making curriculum via social media. Following the social media portion of the intervention, a reflection and closure event and a community photograph exhibit were held. Participants completed pre- and post-test measures. Setting/Subjects: Eighteen PPCGs participated in POM. Settings included participant homes, the medical campus of the palliative care program, and a community art gallery. Measurements: Participant meaning and purpose were assessed through the Meaning in Life Questionnaire. The Flourishing Scale measured PPCG well-being, while the Social Provisions Scale assessed perceived social support. Participants were also given a satisfaction survey at study closure. Results: Presence (p = 0.003) and search (p = 0.023) for meaning were both positively impacted at post-test. Participants' ratings of well-being (p = 0.037), overall social support (p = 0.004), areas of attachment (p = 0.003), social integration (p = 0.026), reassurance of worth (p = 0.002), and guidance (p = 0.014) significantly increased from pre- to post-test. Conclusions: POM is an effective social media-based intervention for PPCGs. Future research should assess the effectiveness of this intervention in populations with differing demographics and its effect on other psychosocial indicators.

Reaching Adolescent and Young Adult Cancer Patients Through Social Media: Impact of the Photographs of Meaning Program.

Purpose: This study assessed the feasibility and preliminary efficacy of the Photographs of Meaning Program for Adolescent and Young Adult cancer patients and survivors (POM-AYA). Methods: POM-AYA is a structured 10-week meaning-based intervention in which participants post photographs and accompanying narratives through a social media platform. Measures of depression, overall quality of life (QoL), and spiritual well-being were assessed on consent (T1), after completing the 10-week intervention (T2) and 2 months' postintervention (T3). Participants also completed a satisfaction questionnaire and follow-up semi-structured interviews. Results: Thirty AYA cancer patients and survivors (ages 17-36) were enrolled in the study. At T2, depressive symptoms were significantly lower and QoL was significantly higher compared with T1. These gains were maintained at T3. There were no significant differences in reported spiritual well-being across the study period. Overall, participants reported high rates of study satisfaction in both the survey and qualitative feedback. Conclusion: POM-AYA appears to be a potentially beneficial, widely accessible intervention in reducing depressive symptoms and increasing QoL in AYA cancer patients and survivors.

The Experience of Pediatric Palliative Caregiving: A Qualitative Analysis From the Photographs of Meaning Program.

The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this intervention. During the social media portion of the POM-PPCG, participants were presented with weekly themes based on a meaning-making curriculum. In response, they took photographs, applied either audio or typed narratives, and shared them via social media. Ninety-five photographs with narratives were produced during the intervention. Through thematic qualitative analysis with consensual qualitative research components, 5 themes were identified: Love, Challenges, Loss, Coping, and The New Normal. This study adds to existing literature by shedding light on the experiences of caregivers of children with palliative care needs. Findings from this research contribute not only to the innovative use of qualitative methods but also to the clinical knowledge and practice regarding the pediatric palliative caregiver experience.

Providers' experiences caring for adolescents who smoke cigarettes.

OBJECTIVE: To describe providers' experiences screening for and counseling adolescent patients who smoke cigarettes. DESIGN: Eight qualitative focus groups were conducted with 51 health care providers in primary care settings. Focus groups were video- and audiotaped; tapes were transcribed for coding by an interdisciplinary team using the constant comparative method. MAIN OUTCOME MEASURES: Providers reported experiences screening for and managing adolescent patients who reported smoking cigarettes. RESULTS: Providers expressed confidence in their ability to screen adolescent patients for tobacco use, particularly as part of regularly scheduled preventive and medical visits. Providers reported difficulty balancing screening for smoking with their concern for maintaining rapport with their adolescent patients. In addition, providers reported that adolescent smoking patterns differed from those of adults, and consequently, providers were not certain at what level of smoking an adolescent required intervention. Furthermore, providers were unclear regarding what interventions were recommended for and effective with adolescents. CONCLUSION: Providers are interested in adolescent evidence-based screening methods and cessation interventions that are supportive of a nonjudgmental and empathic approach to caring for adolescent smokers, particularly those with irregular and situational smoking patterns.

Patients' and caregivers' beliefs about depression screening and referral in the emergency department.

OBJECTIVES: To explore patients' and parents'/caregivers' beliefs about the acceptability of universal depression screening in the emergency department (ED) and their perceptions of the barriers and facilitators to a mental health referral following a positive screen. METHODS: We conducted semistructured interviews with 60 patients seeking care and 59 caregivers in the ED of an urban children's hospital. Interviews were audiotaped, transcribed, coded, and entered into N6 (version 6.0; QSR, Thousand Oaks, Calif) for coding and content analysis. RESULTS: Patients and caregivers supported the idea of depression screening in the ED, generally viewing screening as a reflection of care and concern. Respondents reported apprehension about stigma, privacy, and provider sensitivity. Introducing the screening concept early in the visit and as part of routine care was believed to reduce stigma. Respondents generally indicated that although they would likely follow through with a referral if given, stigma and denial were viewed as significant barriers. Caregivers also reported that logistical problems such as transportation, insurance, and agency hours created barriers to help seeking, but this could be offset by social supports and information about the agency and the provider. CONCLUSIONS: Patients and caregivers generally support depression screening in the pediatric ED but identified several barriers to screening and referral for treatment. Recommendations include introduction of universal screening early in the ED visit, provision of specific information about the meaning of screening results, and support from family and health care providers to help reduce stigma and increase referral acceptability.

The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention.

BACKGROUND: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need. OBJECTIVE: This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers. DESIGN: Participants completed a pre-post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close. SETTING/PARTICIPANTS: Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York. RESULTS: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants ( P = .022). Exit interviews conveyed satisfaction with the intervention. CONCLUSIONS: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.

Depression, acute stress and behavioral risk factors in violently injured adolescents.

OBJECTIVE: The objective of this study was to examine whether emergency department (ED) assessments of depressive and acute stress symptoms after an episode of interpersonal violence are associated with future risk behaviors, reinjury and posttraumatic stress disorder (PTSD) symptoms in adolescents. METHODS: Three hundred ninety-four injured adolescents (age range, 12-17 years) were assessed for depressive symptoms, acute stress symptoms and self-reported risk behaviors either during or immediately after an ED visit (T1). One hundred fifty-eight adolescents completed the follow-up assessment between 6 and 18 months later (T2), during which they were assessed again for self-reported risk behaviors, PTSD symptoms and reinjury. RESULTS: Depression ratings at T1 predicted risk behaviors at T2, controlling for risk behaviors at T1. Ratings of depression and acute stress at T1 predicted PTSD symptoms at T2 but did not significantly predict the self-reported incidence of violent reinjury at T2. CONCLUSIONS: Assessment of depressive symptoms in adolescents who present to the ED after a violent event can help identify those in need of further and more formal assessments as well as, possibly, interventions to prevent future risk behaviors. Identification of depressive and acute stress symptoms can also help identify those violently injured youth who report subsequent PTSD symptoms.

Structuring survivorship care: discipline-specific clinician perspectives.

INTRODUCTION: Several models for survivorship care are prominent within the cancer literature; however, there is little empirical research that examines what oncology clinicians perceive to be the best approach to caring for cancer survivors, what services survivorship programs should include, and how prepared they feel to care for cancer survivors. METHODS: An IRB approved web-based survey of all clinical staff was conducted at a NCI designated comprehensive cancer center with a 49.8% response rate (N = 377). Data were summarized using frequencies and relative frequencies, and pairwise tests of statistical significance were utilized to evaluate differences between clinician type groups. RESULTS: Overall, the largest proportion of respondents preferred a disease-specific survivorship model (37.6%). This preference was specifically observed in oncology physicians and nurses. When asked where specific survivorship services should be provided, respondents indicated a preference for services directly related to survivors' medical treatment (i.e. information about late effects) to be delivered in a disease-specific survivorship clinic, and ancillary services (i.e. nutrition and fertility counseling) to be housed in a centralized comprehensive survivorship clinic. Physicians felt that they have significantly more information, training, and resources to care for cancer survivors than did oncology nurses. DISCUSSION/CONCLUSION: These results indicate that oncology clinicians prefer a combination of survivorship care delivery models where continuing medical needs are met in disease-specific clinics, and comprehensive wellness services are offered in a centralized comprehensive survivorship clinic. Results also suggest that planning for survivorship initiatives should include additional resources, education, and training for clinical staff. IMPLICATIONS FOR CANCER SURVIVORS: These findings underscore the need for a universally accepted definition of cancer survivorship, and support a model for delivering care to cancer survivors that is a blend of the disease-specific and comprehensive survivorship programs.

Feasibility and effects of a Web-based adolescent psychiatric assessment administered by clinical staff in the pediatric emergency department.

OBJECTIVES: To determine the adoption rate of the Web-based Behavioral Health Screening-Emergency Department (BHS-ED) system during routine clinical practice in a pediatric ED, and to assess this system's effect on identification and assessment of psychiatric problems. DESIGN: Descriptive design to evaluate the feasibility of a clinical innovation. SETTING: The ED of an urban tertiary care children's hospital. PARTICIPANTS: Adolescents from 14 to 18 years of age, without acute or critical injuries or illness, presenting with nonpsychiatric symptoms. INTERVENTION: The ED clinical staff initiated the use of the BHS-ED system, which identifies and assesses adolescents for depression, suicidal ideation, posttraumatic stress, substance use, and exposure to violence. Treating clinicians reviewed results and followed routine care practices thereafter. MAIN OUTCOME MEASURES: Adoption rate of the BHS-ED system by nursing staff, identification rates of occult psychiatric problems, and social worker or psychiatrist assessment. Data were collected for 19 months before implementation of the BHS-ED system and for 9 months during implementation. RESULTS: Of 3979 eligible patients, 1327 (33.4%) were asked by clinical staff to get screened using the BHS-ED; of these 1327 patients, 857 (64.6%) completed the screening and 470 (35.4%) refused. During implementation, identification of adolescents with psychiatric problems increased significantly (4.2% vs 2.5%; odds ratio [OR], 1.70; 95% confidence interval [CI], 1.38-2.10), as did ED assessments by a social worker or psychiatrist (2.5% vs 1.7%; OR, 1.47; 95% CI, 1.13-1.90). Of the 857 patients who were screened with the BHS-ED, 90 (10.5%) were identified as having psychiatric problems (OR, 4.58; 95% CI, 3.53-5.94), and 71 (8.3%) were assessed (OR, 5.12; 95% CI, 3.80-6.88). CONCLUSIONS: In a busy pediatric ED, computerized, self-administered adolescent behavioral health screening can be incorporated into routine clinical practice. This can lead to small but significant increases in the identification of unrecognized psychiatric problems.