Measuring hopelessness in advanced cancer: a secondary analysis of the Hopelessness Assessment in Illness questionnaire (HAI).

OBJECTIVE: Hopelessness, or a sense of despair about the future, has been a growing focus of psychological research among patients with serious medical illnesses. This study evaluated the psychometric properties of the Hopelessness Assessment in Illness (HAI) questionnaire, developed specifically for those facing a life-threatening illness. Participants were 344 advanced cancer patients (e.g. lung, breast, gastrointestinal, etc.) participating in two psychotherapy research trials. DESIGN: Descriptive statistics characterised participants in regard to both demographic (age, gender, race, ethnicity, religiosity) and clinical characteristics (cancer type). Scale properties were assessed for internal consistency using Cronbach's coefficient alpha, item-total correlations, Principle Axis factor analysis, and its correlation to relevant psychological constructs. Nonlinear confirmatory factor analysis (CFA) assessed for latent construct variance by gender. MAIN OUTCOME MEASURES: Psychometric properties of the Hopelessness Assessment in Illness questionnaire. RESULTS: Results indicated strong internal consistency and temporal stability of the HAI, with significant correlations between the HAI and several theoretically related psychological constructs. CFA suggested the same single underlying factor for males and females. CONCLUSIONS: The HAI demonstrated strong psychometric properties in the context of advanced cancer. Future research is needed to assess the utility of the HAI in more medically and geographically diverse populations.

Cultural adaptation of meaning-centered psychotherapy for latino families: a protocol.

INTRODUCTION: Literature suggests couple-based interventions that target quality of life and communication can lead to positive outcomes for patients with cancer and their partners. Nevertheless, to date, an intervention to address the needs of Latino families coping with advanced cancer has not been developed. Meta-analytic evidence suggests that culturally adapted evidenced-based intervention targeting a specific cultural group is four times more effective. Our goal is to culturally adapt a novel psychosocial intervention protocol entitled 'Caregivers-Patients Support to Latinx coping advanced-cancer' (CASA). We hypothesised that combine two evidence-based interventions and adapting them, we will sustain a sense of meaning and improving communication as patients approach the end of life among the patient-caregiver dyad. METHODS AND ANALYSIS: To culturally adapt CASA, we will follow an innovative hybrid research framework that combines elements of an efficacy model and best practices from the ecological validity model, adaptation process model and intervention mapping. As a first step, we adapt a novel psychosocial intervention protocol entitled protocol entitled 'Caregivers-Patients Support to Latinx coping advanced-cancer' (CASA). The initial CASA protocol integrates two empirically based interventions, meaning-centred psychotherapy and couple communication skills training. This is an exploratory and prepilot study, and it is not necessary for a size calculation. However, based on recommendations for exploratory studies of this nature, a priori size of 114 is selected. We will receive CASA protocol feedback (phase 1b: refine) by conducting 114 questionnaires and 15 semistructured interviews with patients with advanced cancer and their caregivers. The primary outcomes of this study will be identifying the foundational information needed to further the develop the CASA (phase IIa: proof-of-concept and phase IIb: pilot study). ETHICS AND DISSEMINATION: The Institutional Review Board of Ponce Research Institute approved the study protocol #1907017527A002. Results will be disseminated through peer-reviewed publications.

The 2nd Annual US Celebration of World Hospice and Palliative Care Day: A virtual coming together to support equity in palliative care access.

OBJECTIVE: On October 5-6, 2021, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the 2nd Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to describe the event within the broader context of the international WHPCD theme: "Leave No One Behind - Equity in Access to Palliative Care." We reflect on lessons learned in anticipation of the 3rd annual conference to be held October 3-4, 2022. METHODS: Description of the 2nd annual event, conference planning team reflection, and attendee evaluation responses. RESULTS: The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The 2021 US-based innovative virtual conference featured 37 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across 11 diverse sessions with a focus on health equity and COVID-19 considerations. Two primary aims continue to guide the event: community building and wisdom sharing at the intersection of art and science. 278 registrants from at least 14 countries and 21 different states across the US joined the program, which served as a global debriefing for hospice and palliative care workers from diverse settings, contexts, and disciplines. SIGNIFICANCE OF RESULTS: The US WHPCD Celebration creates a virtual coming together for collective reflection on hospice and palliative care delivery amid vast changes in clinical practice, research, and policy, both locally and globally. In addition, our goal to ensure an internationally relevant, culturally inclusive, and multidisciplinary agenda will continue to draw increased participation worldwide during future annual events.

Cost-utility analysis of meaning-centered group psychotherapy for cancer survivors.

BACKGROUND: Meaning-centered group psychotherapy for cancer survivors (MCGP-CS) improves meaning, psychological well-being, and mental adjustment to cancer and reduces psychological distress. This randomized controlled trial was conducted to investigate the cost-utility of MCGP-CS compared with supportive group psychotherapy (SGP) and care-as-usual (CAU). METHODS: In total, 170 patients were randomized to MCGP-CS, SGP, or CAU. Intervention costs, direct medical and nonmedical costs, productivity losses, and health-related quality of life were measured until 6 months follow-up, using the TIC-P, PRODISQ, data from the hospital information system, and the EQ-5D. The cost-utility was calculated by comparing mean cumulative costs and quality-adjusted life years (QALYs). RESULTS: Mean total costs ranged from €4492 (MCGP-CS) to €5304 (CAU). Mean QALYs ranged .507 (CAU) to .540 (MCGP-CS). MCGP-CS had a probability of 74% to be both less costly and more effective than CAU, and 49% compared with SGP. Sensitivity analyses showed these findings are robust. If society is willing to pay €0 for one gained QALY, MCGP-CS has a 78% probability of being cost-effective compared with CAU. This increases to 85% and 92% at willingness-to-pay thresholds of €10 000 and €30 000, which are commonly accepted thresholds. CONCLUSIONS: MCGP-CS is highly likely a cost-effective intervention, meaning that there is a positive balance between the costs and gains of MCGP-CS, in comparison with SGP and CAU.

Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C): Rationale and Overview.

OBJECTIVE: The multidimensional burden that results from providing care to a patient with cancer is well documented and a growing number of psychosocial interventions have been developed to address this burden. None, however, target existential distress, a critical, common element - and potentially driving mechanism - of caregiver burden. Meaning-Centered Psychotherapy (MCP) is a structured psychotherapeutic intervention originally developed by our group to target existential distress and spiritual well-being among patients with advanced cancer. We are currently developing Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C). The objective of this qualitative study is to describe the application of MCP to the unique experience of caregivers of patients with advanced cancer. METHODS: A case study of a participant from an initial MCP-C group is presented, with a focus on the application of sources of meaning to the cancer caregiving experience. RESULTS: The exploration of critical sources of meaning in the participant's life generally, and related to caregiving specifically, highlighted significant areas of growth, including an increased understanding of the historical context shaping her experience of providing care, the recognition of the need for improved self-care and reconnecting with meaningful activities, and the possibility for continued connectedness to others and the world, despite the limitations resulting from her husband's terminal illness. SIGNIFICANCE OF RESULTS: Existential distress is a critical and often overlooked element of burden among cancer caregivers. MCP-C is intended to target this component of burden and address this critical gap in the palliative care literature. Clinical trials are underway to evaluate the efficacy of MCP-C delivered over the Internet. Future studies are needed to evaluate the benefits of MCP-C for particularly burdened groups of caregivers, such as caregivers of patients with brain tumors and those undergoing hematopoietic stem cell transplantations, and to identify target points of delivery that will optimize the intervention's benefits.

Screening, assessment, and management of fatigue in adult survivors of cancer: an American Society of Clinical oncology clinical practice guideline adaptation.

PURPOSE: This guideline presents screening, assessment, and treatment approaches for the management of adult cancer survivors who are experiencing symptoms of fatigue after completion of primary treatment. METHODS: A systematic search of clinical practice guideline databases, guideline developer Web sites, and published health literature identified the pan-Canadian guideline on screening, assessment, and care of cancer-related fatigue in adults with cancer, the National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines In Oncology (NCCN Guidelines) for Cancer-Related Fatigue and the NCCN Guidelines for Survivorship. These three guidelines were appraised and selected for adaptation. RESULTS: It is recommended that all patients with cancer be evaluated for the presence of fatigue after completion of primary treatment and be offered specific information and strategies for fatigue management. For those who report moderate to severe fatigue, comprehensive assessment should be conducted, and medical and treatable contributing factors should be addressed. In terms of treatment strategies, evidence indicates that physical activity interventions, psychosocial interventions, and mind-body interventions may reduce cancer-related fatigue in post-treatment patients. There is limited evidence for use of psychostimulants in the management of fatigue in patients who are disease free after active treatment. CONCLUSION: Fatigue is prevalent in cancer survivors and often causes significant disruption in functioning and quality of life. Regular screening, assessment, and education and appropriate treatment of fatigue are important in managing this distressing symptom. Given the multiple factors contributing to post-treatment fatigue, interventions should be tailored to each patient's specific needs. In particular, a number of nonpharmacologic treatment approaches have demonstrated efficacy in cancer survivors.

Effectiveness and cost-effectiveness of meaning-centered group psychotherapy in cancer survivors: protocol of a randomized controlled trial.

BACKGROUND: Meaning-focused coping may be at the core of adequate adjustment to life after cancer. Cancer survivors who experience their life as meaningful are better adjusted, have better quality of life and psychological functioning. Meaning-Centered Group Psychotherapy for Cancer Survivors (MCGP-CS) was designed to help patients to sustain or enhance a sense of meaning and purpose in their lives. The aim of the proposed study is to evaluate the effectiveness and cost-effectiveness of MCGP-CS. METHODS/DESIGN: Survivors diagnosed with cancer in the last 5 years and treated with curative intent, are recruited via several hospitals in the Netherlands. After screening, 168 survivors are randomly assigned to one of the three study arms: 1. Meaning-Centered Group Psychotherapy (MCGP-CS) 2. Supportive group psychotherapy (SGP) 3. Care as usual (CAU). Baseline assessment takes place before randomisation, with follow up assessments post-intervention and at 3, 6 and 12 months follow-up. Primary outcome is meaning making (PMP, PTGI, SPWB). Secondary outcome measures address quality of life (EORTC-30), anxiety and depression (HADS), hopelessness (BHS), optimism (LOT-R), adjustment to cancer (MAC), and costs (TIC-P, EQ-5D, PRODISQ). DISCUSSION: Meaning-focused coping is key to adjustment to life after cancer, however, there is a lack of evidence based psychological interventions in this area. Many cancer survivors experience feelings of loneliness and alienation, and have a need for peer support, therefore a group method in particular, can be beneficial for sustaining or enhancing a sense of meaning. If this MCGP-CS is effective for cancer survivors, it can be implemented in the practice of psycho-oncology care. TRIAL REGISTRATION: Netherlands Trial Register, NTR3571.

Health-related quality of life and life satisfaction in colorectal cancer survivors: trajectories of adjustment.

BACKGROUND: This longitudinal study describes the five year trajectories of health-related quality of life (HR-QOL) and life satisfaction in long term colorectal cancer survivors. PATIENTS AND METHODS: A population-based sample of 1966 colorectal cancer survivors were surveyed at six time points from five months to five years post-diagnosis. Predictor variables were: socio-demographic variables, optimism; cancer threat appraisal; perceived social support. Quality of life was assessed with the Functional Assessment of Cancer Therapy-Colorectal (HR-QOL); and the Satisfaction with Life Scale. Growth mixture models were applied to identify trajectory classes and their predictors. RESULTS: Distinct adjustment trajectories were identified for HR-QOL and life satisfaction. Lower optimism, poorer social support, a more negative cognitive appraisal, and younger age were associated with poorer life satisfaction, while survivors with less than 8 years of education had higher life satisfaction. This pattern was similar for overall HR-QOL except that educational level was not a significant predictor and later stage disease and female gender emerged as related to poorer outcomes. One in five survivors reported poorer constant HR-QOL (19.2%) and a small group had poor life satisfaction (7.2%); 26.2% reported constant high HR-QOL and 48.8% had high constant life satisfaction. Socioeconomic disadvantage and remoteness of residence uniquely predicted poorer outcomes in the colorectal cancer specific HR-QOL sub domain. CONCLUSION: Although HR-QOL and subjective cognitive QOL share similar antecedents their trajectory patterns suggested they are distinct adjustment outcomes; with life satisfaction emerging as temporally stable phenomenon. Unique patterns of risk support suggest the need to account for heterogeneity in adjustment in longitudinal QOL studies with cancer survivors.

Assessing hopelessness in terminally ill cancer patients: development of the Hopelessness Assessment in Illness Questionnaire.

Hopelessness has become an increasingly important construct in palliative care research, yet concerns exist regarding the utility of existing measures when applied to patients with a terminal illness. This article describes a series of studies focused on the exploration, development, and analysis of a measure of hopelessness specifically intended for use with terminally ill cancer patients. The 1st stage of measure development involved interviews with 13 palliative care experts and 30 terminally ill patients. Qualitative analysis of the patient interviews culminated in the development of a set of potential questionnaire items. In the 2nd study phase, we evaluated these preliminary items with a sample of 314 participants, using item response theory and classical test theory to identify optimal items and response format. These analyses generated an 8-item measure that we tested in a final study phase, using a 3rd sample (n = 228) to assess reliability and concurrent validity. These analyses demonstrated strong support for the Hopelessness Assessment in Illness Questionnaire providing greater explanatory power than existing measures of hopelessness and found little evidence that this assessment was confounded by illness-related variables (e.g., prognosis). In summary, these 3 studies suggest that this brief measure of hopelessness is particularly useful for palliative care settings. Further research is needed to assess the applicability of the measure to other populations and contexts.