• Burden and Mental Health of Family Caregivers of Cancer Patients: The Impact of Spirituality

      La, In Seo; Johantgen, Mary E. (2020)
      Background: As the primary source of care for individuals with cancer, family caregivers are relied on for treatment support and emotional care during the cancer trajectory. Studies on caregiver burden and psychological sequelae among cancer caregivers have been conducted cross-sectionally. Spirituality has been suggested as a potential buffer between burden and sequelae. Yet, there have been very few longitudinal studies addressing burden, depression, and spirituality, and there is limited information on psychometric properties of the spirituality measures in cancer caregivers. Purpose: The aims of this study were to: 1) evaluate validity of the Spiritual Perspective Scale (SPS) and explore differences in spirituality across caregiver and patient characteristics, 2) describe caregiver burden during active cancer treatment and explore caregiver and patient factors influencing caregiver burden, and 3) examine changes in caregiver burden, spirituality, and depression and explore the moderating effect of spirituality on burden-depression relationship over time. Methods: A secondary analysis of data from a longitudinal study of cancer caregivers from the NIH Clinical Center was conducted. Caregivers completed measures, including the Spiritual Perspective Scale (SPS), Caregiver Reaction Assessment (CRA), and NIH Toolbox and PROMIS® measures. Structural equation modeling and linear mixed modeling were used for testing study aims. Results: The SPS was found to have satisfactory psychometric properties in cancer caregivers. Adjusting for a direct effect of race did not alter the pattern of results, and caregivers who were older, female, racial/ethnic minorities, less educated, affiliated with a religion, and who provided care to anyone other than the patient reported higher levels of spirituality. Baseline mutuality between the caregiver and patient was negatively associated with initial burden. Changes in caregiver burden were related to being spouse caregivers, sole caregivers, and income. Scores on total burden, spirituality, and depression remained stable over time. Caregivers’ spirituality moderated the link between burden and depression (-1.26, p = .025). Conclusions: Higher levels of spirituality may act as a protective factor in the relationship between burden and depression during active cancer treatment. Identified factors related to burden and strategies to strengthen spirituality should be considered to improve caregiver mental health.
    • Current Perception Threshold Testing (CPT) to Measure Sensory Fiber Changes After Chemotherapy

      Couture, Darren Joseph; Dorsey, Susan Grace (2011)
      Introduction: Chemotherapy induced peripheral neuropathy (CIPN) remains a significant complication of cancer treatment. For patients receiving taxanes and/or platinum chemotherapy, the incidence is as high as 84-100%. With no existing preventative or curative treatment, patients that develop CIPN report symptoms ranging from constant numbness and tingling of the hands and/or feet to debilitating burning pain. Unfortunately, symptoms often persist for several months or even years after the completion of treatment. As there is no "gold standard" measure to accurately identify CIPN, diagnosis is dependent upon the patient's self report of symptoms, often when long term or permanent neuronal injury has already occurred. When symptoms limit function, current oncologic practice is to limit or discontinue treatment. A definite need exists for a standard measure to accurately identify and more importantly predict the outcome of CIPN, in an effort to limit long-term neuronal damage and improve prognosis. Purpose: The purpose of this study was to determine if CPT measurement could accurately identify patients who develop CIPN and whether this measure could predict CIPN prior to developing symptoms, in patients receiving a taxane and/or a platinum chemotherapy regimen. Methods: This prospective study enrolled 35 chemotherapy naïve participants. Subjective and objective measurements, including CPT were collected during each chemotherapy treatment visit to assess sensory nerve function and the development of CIPN. Results: At 2000 Hz, 250 Hz, and 5 Hz, the CPT identified 78%, 56%, and 33% of participants who developed CIPN, respectively. However, the false-positive rate was 70%, 50%, and 45%, respectively. Generalized linear mixed model analysis determined that CPT measures do not predict the outcome of CIPN. However, the number of treatment visits was predictive of CIPN (OR=1.88, 95% CI=1.10-3.20, p=0.02). This suggests that a one-treatment increase in visits from a mean of 9.4, increases the odds of CIPN development by 88%. Discussion: While this measure accurately identfied a majority of patients with CIPN at 2000 Hz, the false-postive rate was unnacceptibly high. This study demonstrated that CPT measurement did not predict the outcome of CIPN.The lack of predictive significance demonstrated in this investigation is likely attributed to the small sample size.
    • Patient and Intimate Partner (IP) Illness Appraisals in Cancer: A Multi-Methods Study

      Francis, Martha Eileen; Johantgen, Mary E. (2021)
      Background: Psychological distress for patients with serious illness has been associated with increased physical and spiritual distress, decreased quality of life, and increased medical expenses at end of life (EOL). For both cancer patients and their intimate partners (IPs), appraising the illness and communicating about it can be challenging. Yet, there is little evidence on how best to support them. Objectives: Bodenmann’s Systemic-Transactional Model (STM) of dyadic coping provided foundation to study how living with cancer impacts communication at primary appraisal level in patient/ IP dyad. The purpose of this exploratory multi-methods study was to understand patient/IP illness appraisals. This was investigated through following aims: 1. Describe patient/IP perceptions of dyadic communication before and after diagnosis of advanced cancer (including barriers and facilitators to sharing emotionally vulnerable content); 2. Describe patterns (incongruent/congruent) of patient and IP communication during advanced cancer; and 3. Explore relationships between experiential suffering (Suffering Pictogram) and communication congruency (CCAT-PF measure). Methods: Descriptive phenomenology was used for the qualitative phase. In-depth, semi-structured interviews with dyads were done, followed by individual interviews. The quantitative phase assessed cancer communication and suffering using established measures. Results: The main findings from qualitative analyses included: 1) Vulnerable communication is complicated by balancing two opposing worlds: Hope/Positivity and Uncertainty/Fear of Death; and 2) Vulnerable communication about EOL and hospice is emotional and unfamiliar. Hearing the word ‘hospice’ ends dyad’s uncertainty, confirming death from cancer is definite. Patients and IPs articulated feeling unprepared and needing guidance about skills to cross this vulnerable environment toward open communication. Quantitative data from communication measures showed low to medium discrepancy between dyads yet, patients displayed more discrepant communication behavior than their IP counterparts. IPs consistently exhibited higher suffering scores than patients across Overall Suffering and in 6/8 suffering domains. Worry and Fear were identified as highest domains of suffering for both patients/IPs. Conclusion: For IP dyads to articulate preferences for care with providers they must first be provided external support to facilitate vulnerable conversations within the dyad itself. These dyadic conversations must be initiated early after diagnosis to strengthen available supports during illness and EOL.
    • Psychomtetric Evaluation of the Pediatric Constipation Assessment Scale (P-CAS) in Children with Cancer or Hematologic Disorders

      Woolery, Myra; McGuire, Deborah B. (2013)
      Background: Constipation is an under-recognized symptom in children receiving opioids and/or cancer treatments whose management requires accurate assessment yet few self-report measures exist. The purpose of this three-phase instrument testing study, guided by the Model for Constipation Across the Lifespan, was to revise and evaluate the psychometric properties of the Pediatric Constipation Assessment Scale (P-CAS), a self-report measure in children aged 8 to 17 years with cancer or hematologic disorders. The aims were to: (Phase 1) estimate content validity using an expert panel of healthcare professionals (HCPs) and children; (Phase 2) administer the P-CAS to children followed by cognitive debriefing interviews to evaluate responses and assist in revising the scale; and (Phase 3) administer the P-CAS to two groups of children with cancer or hematologic disorders at low and high risk for constipation to evaluate reliability and validity. Methods: In Phase 1, 12 HCPs and 12 children rated the relevancy of the P-CAS items and content validity indices were estimated at item- (I-CVI) and scale-level (S-CVI). In Phase 2, 12 children completed the P-CAS followed by recorded cognitive interviews which were analyzed using content analysis. In Phase 3, 25 children completed the P-CAS and analysis addressed reliability and validity. In all phases, descriptive profiles were compiled for participants. Results: I-CVI was .25 -1.0 for HCPs, .58-1.0 for children, and .50-1.0 combined. S-CVI was acceptable and with six items deleted, increased to .83 (HCPs), .91 (children), and .87 (combined). Cognitive interviews revealed potential sources of measurement error including variable time-frame recall and problems with item interpretation and summated rating selections. Alpha coefficients were acceptable in Phases 2 (.84) and 3 (.80). Nine items in Phase 2 and 8 in Phase 3 had item-total correlations of .30-.71. Conclusions: Results demonstrated evidence of content validity and internal consistency reliability. Variability in I-CVI across items demonstrated the importance of evaluating each item even though S-CVI was acceptable. Pre-testing accompanied by cognitive interviews was beneficial in identifying difficulties not recognized during content validation. Findings provide a foundation for further psychometric testing that will expand the ability to assess constipation in children with cancer/hematologic disorders.