Patient-reported outcome measures suitable to assessment of patient navigation.

BACKGROUND: Patient-reported outcomes (PROs) are measures completed by patients to capture outcomes that are meaningful and valued by patients. To help standardize PRO measures in patient navigation research and program evaluation, the Patient-Reported Outcomes Working Group (PROWG) was convened as part of the American Cancer Society's National Patient Navigator Leadership Summit. METHODS: The PROWG consisted of clinicians, researchers, and program managers from a variety of perspectives who developed a set of recommended PRO measures across the cancer continuum (ie, screening, diagnostic follow-up, treatment, survivorship, end of life) as well as those useful for assessing family caregivers. Measures were recommended based on face validity, responsiveness to navigation, reliability, and construct validity in relevant populations. Other considerations included readability, existence of multiple language versions, the existence of norm groups, and respondent burden. RESULTS: The PROWG reached consensus on measures for use in the domains of treatment adherence; perceived barriers to care; satisfaction with cancer care; satisfaction with patient navigation services; working alliance with patient navigator; perceived knowledge/competence/self-efficacy; functional assessment/symptom burden; global quality of life; specific quality-of-life symptoms (eg, depression, anxiety); and perceived cultural competency of the navigator. In domains where validated measures were found lacking, recommendations were made for areas of needed scale development. CONCLUSIONS: These measures should guide research and programmatic evaluation of patient navigation.

Actual change and inaccurate recall contribute to posttraumatic growth following radiotherapy.

People with cancer often report that they experience personal growth as a result of the disease, but such reports have unclear validity. Some suggest such growth results from Rogers's (1951) hypothesized organismic valuing process (OVP), an innate tendency for people to gravitate toward well-being; others suggest this growth may be a positive illusion resulting from temporal self-comparisons. To test these conceptualizations, the authors examined 83 individuals with Stages 0-III breast or prostate cancer. Patients completed measures of positive attributes and personal life goals before radiotherapy (Time 1) and after radiotherapy (Time 2). At Time 2, participants also attempted to recreate their Time 1 responses and completed a posttraumatic growth (PTG) measure. PTG was significantly related with actual increases (but not perceived increases) in the relative importance of intrinsic goals versus extrinsic goals and with perceived increases (but not actual increases) in positive attributes. These measures were unrelated to one another and thus explained unique variance in PTG. Data suggest that both actual change processes related to the OVP and biases in autobiographic recall may independently contribute to PTG reports.

Quality of life in survivors of multiple primary cancers compared with cancer survivor controls.

BACKGROUND: Cancer survivors may develop additional cancers after their first diagnosis, but to the authors' knowledge the quality of life (QOL) consequences of a second cancer are not known. The current study assessed QOL and its correlates after a second cancer diagnosis. METHODS: QOL was compared between 487 survivors of second-order and higher-order primary cancer diagnoses, and a matched group of 589 survivors of a single cancer diagnosis. Outcome measures included standardized questionnaires that assessed depressive symptoms, perceived stress, vitality, post-traumatic growth, existential well-being, sexual adjustment, and global QOL. RESULTS: Survivors of multiple primary cancer diagnoses had significantly lower global QOL (t (792) = 5.42; P < .001), vitality (Student t test [t] (794) = 2.41; P < .01), and existential well-being (t (775) = 2.78; P < .01), and higher intrusive stress symptoms (t (775) = -1.93; P < .05). Controlling for demographic, medical, and trait-like psychosocial characteristics (eg, optimism and resilience), having multiple primary cancer diagnoses explained small, although significant, variances in global QOL (coefficient of determination [R(2)] = .04; P < .001), vitality (R(2) = .01; P < .05), and existential well-being (R(2) = .01; P < .05), with patients in the multiple primary cancer group faring worse on all of these measures. CONCLUSIONS: The results of the current study suggest that the typical survivor of multiple primary cancers experiences modest but lasting QOL deficits.

Implementation of NCCN distress management guidelines by member institutions.

Up to half of all adults with cancer experience clinically significant psychological distress and much of this distress goes unrecognized and untreated. As part of an effort to improve the care of cancer patients, the National Comprehensive Cancer Network (NCCN) has developed clinical practice guidelines for distress management that include recommendations about the evaluation and treatment of distress. These authors conducted a study to evaluate the implementation of these distress management guidelines by NCCN member institutions. The NCCN member institutions that treat adults were asked in April and May 2005 to describe their distress management practices, and 15 (83%) provided responses. Of these, 8 (53%) conduct routine distress screening for at least some patient groups, with 4 additional institutions (27%) pilot-testing screening strategies. However, only 20% of surveyed member institutions screened all patients as the guidelines recommend. In addition, whether institutions that conduct routine distress screening do so through standardized assessment methods is unclear, because 37.5% of institutions that conduct screening rely only on interviews to identify distressed patients. Findings suggest that most institutions consider screening patients' mental health concerns important and worthwhile, but that greater implementation of guideline recommendations is needed.

Methodological issues in the recruitment of cancer pain patients and their caregivers.

Published pain management guidelines recommend that caregivers of cancer pain patients be provided pain management education, but little is known about the utility of providing such information. This study examined recruitment and retention of cancer pain patients and caregivers for a randomized clinical trial that provided psychoeducation and stress management training to caregivers. Of 397 patient/caregiver dyads screened, only 22 (5.5%) were study eligible, consented to participate, and completed the study. A variety of problems hampered successful participation, including a high proportion of non-cancer-related pain syndromes among patients, a high proportion of patients without caregivers, and participants' perception of study burden. Results suggest that researchers should recruit from a broad patient base and limit study burden on participants.

Interpersonal factors predict increased desire for hastened death in late-stage cancer patients.

BACKGROUND: Cancer patients at the end of life sometimes express a wish that death would come quickly, but this desire for hastened death (DHD) remains little understood. Relationships with spousal caregivers may play a role in patients' DHD. PURPOSE: This study examined factors that could predict an increase in the DHD in late-stage cancer patients over the course of 4 months, including marital and caregiving variables that have not previously been examined. METHOD: Patients completed the Schedule of Attitudes Toward Hastened Death and other measures, including the Dyadic Adjustment Scale. Caregivers were asked how many hours they spent weekly in caregiving activities and completed the Caregiver Demands Scale. Approximately 4 months later, DHD was reassessed in surviving patients. RESULTS: Sixty caregiver/patient dyads completed all measures. Desire for hastened death was generally low at both assessments; however, more depression and greater dyadic adjustment reported by patients, and more hours spent in caregiving activities by spouses, each independently predicted increased DHD in patients at the Time 2 assessment. CONCLUSIONS: Findings suggest that issues related to spousal caregivers play an important role in the course of DHD in cancer patients at the end of life.

Validation of the Distress Thermometer with bone marrow transplant patients.

The Distress Thermometer (DT) is a one-item screening measure of psychological distress in cancer patients. This study examines the operating characteristics of the DT in patients about to undergo bone marrow transplant (BMT). Patients (N=491) completed the DT, the Center for Epidemiological Studies-Depression Scale (CES-D), the State-Trait Anxiety Inventory-State Version (STAI-S), the ECOG Performance Status Scale, and the Patient Problem List. DT scores were related to higher depression, higher anxiety, and poorer performance status. Receiver operating characteristic (ROC) curve analyses of DT scores yielded area under the curve estimates of 0.75 when compared to the CES-D cutoff score of 16, suggesting the DT has acceptable overall accuracy. The DT cutoff score of 4 had the greatest sensitivity and specificity when compared to the CES-D cutoff score. Patients above this cutoff score reported worse ECOG scores and more practical, family, emotional, and physical problems (all p's< or =0.05) than those below the cutoff. The findings suggest the DT is a useful tool for screening for distress in BMT patients. The optimal DT cutoff score of 4 found here was identical to that found in another study using different criteria. This cutoff score also identified patients with problems likely to reflect psychological distress.

Relationship of problem-focused coping strategies to changes in quality of life following treatment for early stage breast cancer.

This study examined whether problem-focused coping strategies used by early stage breast cancer patients at the end of treatment could predict changes in quality of life six months later. One hundred forty-six women completed measures of problem-focused coping and quality of life at the end of early stage breast cancer treatment. Quality of life was reassessed six months later. Women who focused more on their symptoms at treatment end experienced less physical and mental quality-of-life improvement six months later. Women more likely to seek out information about their illness experienced greater physical quality-of-life improvement. The relationship of focusing on symptoms with quality of life was broad-based; the relationship of information seeking with quality of life was limited to improvements in physical functioning. Results suggest that focusing on symptoms is a maladaptive approach to illness, but that information seeking may yield benefits to physical recovery.

Literal and symbolic immortality: the effect of evidence of literal immortality on self-esteem striving in response to mortality salience.

Three studies investigated the effect of encouraging participants to believe in an afterlife on the relationship between mortality salience and self-esteem striving. Participants were exposed to essays arguing either in favor of or against the existence of an afterlife, and reminded about death or a control topic. Mortality salience led to increased accuracy ratings of a positive personality description (Studies 1 and 2) and increased striving for and defense of values (Study 3) among participants who read the essay arguing against an afterlife, but not among participants who read the essay in favor of it. The implications for the terror management analysis of self-esteem, the appeal of immortality beliefs, and the interplay between self-esteem striving and spiritual pursuits are discussed.