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OBJECTIVES: The current study explored the impact of cancer-related fertility concerns on existential distress and meaning making among female breast cancer (BC) patients of childbearing age and assessed support needs. METHODS: The current study was embedded within a larger study. A seven-question online survey was administered to female BC participants to explore meaning and identity in their lives. Applied thematic analysis was used to analyze participants' written responses. RESULTS: A total of 98 participants completed the survey, the majority of whom identified as white, married or partnered, and employed full time and with stage I or II BC. More than 50% of the participants expressed a need for support from a counselor or support group during their cancer experience. Three subthemes emerged related to existential distress and cancer-related fertility concerns: (1) loss of womanhood: treatment-related physical changes impact on gender identity; (2) existential distress due to treatment decisions impacting fertility; and (3) shattered vision: cancer-related infertility impact on meaning and purpose. Four subthemes emerged related to meaning making with fertility-related existential concerns: (1) coping with loss of meaning, (2) re-evaluating priorities in life; (3) resilience to loss, and (4) persistent loss of meaning. SIGNIFICANCE OF RESULTS: Study results offer valuable insights into the experiences of female BC survivors' cancer-related fertility on existential distress and meaning making. Development of psychological interventions targeted to support this population to cope with existential distress due to cancer-related fertility concerns and meaning making are needed to improve the quality of life of this population.
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BACKGROUND: Cancers of the head and neck region are associated with high symptom burden and elevated levels of psychological distress. Radiotherapy (RT) is a common treatment for patients with head and neck cancer (HNC) that is associated with psychological distress related to the immobilizing nature of the treatment, frequency of treatment delivery, and side effects. Guided imagery is a relaxation technique that is beneficial in reducing psychological distress in patients with other cancer diagnoses but has not been studied in this patient population. The purpose of this study is to evaluate the feasibility and acceptability of a brief guided imagery intervention (guided imagery for treatment, GIFT) to reduce RT-related anxiety and depression in patients with HNC relative to treatment as usual (TAU). METHODS: Patients with HNC planning to receive RT will be recruited to participate in a randomized controlled trial evaluating a brief, two-session guided imagery intervention (GIFT) relative to TAU alone. Primary aims include acceptability and feasibility evaluated through quantitative and qualitative methods. Measures of anxiety and depression, symptom burden, health-related quality of life, and anxiolytic medication use will be collected at baseline, during treatment, and at 1-month follow-up. DISCUSSION: There are no published interventions of guided imagery for anxiety and depression in patients with HNC despite its efficacy in other populations of patients with cancer. This proposed project evaluates the feasibility and acceptability of an intervention that has the potential to reduce psychological distress in a vulnerable population. Additionally, we will preliminarily examine the impact of behavioral intervention on psychological distress and the use of anxiolytic medication, a novel area of study. TRIAL REGISTRATION: Clinicaltrials.gov NCT03662698 ; registered on 9/6/2018.
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To address workforce issues in professional geropsychology, clinical training sites must offer opportunities to build skills for working with older adults and aging families. Neuropalliative care (NPC) may offer a valuable learning environment for geropsychology trainees to develop professional competencies, while positively contributing to patient care. This article describes a novel clinical rotation for an advanced geropsychology trainee in an interdisciplinary specialty NPC clinic. A co-assessment model emerged as a useful strategy for integrating the trainee into the established NPC team. Two case examples illustrate the co-assessment's ability to enhance: collaboration within the clinic; psychological care for patients and care partners; and opportunities for the trainee to build competencies related to assessment, intervention, teams, and consultation. This paper concludes with a discussion of the benefits of NPC as a clinical training rotation for geropsychology trainees, as well as practical considerations for implementation in other clinics.
Subject(s)
Education, Medical, Graduate , Geriatrics , Humans , Aged , Curriculum , Clinical Competence , Geriatrics/education , Interdisciplinary StudiesABSTRACT
CONTEXT: Psychological distress is common in patients with cancer, and oncology providers are often tasked with utilizing psychotropic medications to treat such symptoms. OBJECTIVE: This study aims to characterize how oncology providers prescribe psychotropic medications and to assess their comfort level with prescribing these medications. METHODS: A cross-sectional survey was sent to oncology medical doctors, nurse practitioners, and physician assistants who prescribe psychotropic medications to patients with cancer at a large academic medical center in the Mountain West. The survey included questions regarding provider subspecialty, degree, comfort with prescribing psychotropic medications, and factors that informed their prescribing. RESULTS: Oncology providers (n = 65) reported equal proportions of comfort and discomfort with prescribing psychotropic medications. The medication class with the most prescribers was benzodiazepines, with 89.2% (n = 58) of the respondents prescribing those medications. The least prescribed category was mood stabilizers, with 4.6% (n = 3) prescribing this category. Prescribers identified that barriers to their comfort included difficulty connecting patients to follow-up care with mental health professionals and inadequate mental health education for providers. Providers responded that continuing mental health education and increasing patient access to mental health resources would increase their prescribing comfort. CONCLUSION: Providers reported equal parts comfort and discomfort with prescribing psychotropic medications; avenues to increase comfort should involve focused mental health education during formal training and continued education throughout their oncology careers. A clinical pathway for prescribing psychotropic medications with resources to connect patients to long-term mental health care may also increase prescribing comfort.
Subject(s)
Nurse Practitioners , Psychotropic Drugs , Cross-Sectional Studies , Humans , Psychotropic Drugs/therapeutic use , Surveys and QuestionnairesABSTRACT
OBJECTIVE: Caregivers of patients with advanced cancer experience significant anxiety, depression, and distress. Caregivers have barriers to accessing in-person treatment to manage stress. Technology allows for the dissemination of evidence-based interventions in a convenient way. This study examined usage rates of Pep-Pal (an evidence-based mobilized intervention to help caregivers of patients with advanced cancer manage distress) and estimates of efficacy on anxiety, depression, stress, and sexual dysfunction. METHODS: Fifty-six primary caregivers of patients with advanced cancer were recruited through oncology clinics and randomized to either Pep-Pal (a mobilized psychoeducation and skills-based intervention for caregivers, n = 26) or treatment as usual (TAU; n = 30). All were screened for moderate anxiety on the Hospital Anxiety and Depression Scale-Anxiety screening assessment (A ≥ 8) at baseline. RESULTS: Participants randomized to Pep-Pal experienced greater reductions in perceived stress (PSS; F = 3.91, p = .05), greater increases in ability to learn and use stress management skills (F = 6.16, p = 0.01), and greater increases in sexual function (women only; F = 5.07, p = 0.03) compared to participants in TAU. Of Pep-Pal participants, only 10 (38.5%) watched at least 7/9 full-length sessions. The a priori hypothesis and criterion that participants would watch at least 75% full-length sessions were not met. CONCLUSIONS: A brief, easily disseminated mobile intervention showed poor adherence, but had limited estimates of efficacy for secondary outcomes; perceived stress, learning stress management skills, and sexual functioning (women only). Future directions are discussed.
Subject(s)
Caregivers , Neoplasms , Depression/therapy , Female , Humans , Neoplasms/therapy , Pilot Projects , Quality of LifeABSTRACT
OBJECTIVES: Suicidal ideation (SI) underlies risk of death by suicide. It is well established that patients with cancer are at increased risk of death by suicide. Therefore, understanding SI in patients with cancer is critically important. The goal of this systematic review was to investigate the prevalence, risk factors, intervention, and assessment of SI in patients with cancer. METHODS: This systematic review was registered with the PROSPERO database (CRD42018115405) and was guided by the PRISMA statement. We searched Medline, PsycInfo, Embase, CINAHL, the Cochrane Database of Systematic Reviews, and Cochrane Central. Two reviewers independently screened abstracts and assessed for quality assurance using a revised Newcastle-Ottawa Scale. RESULTS: We identified 439 studies to screen for eligibility. Eligible studies included adults with cancer diagnoses and listed SI as an outcome. Ultimately, 44 studies were included in the analyses. Prevalence of SI ranged greatly from 0.7% to 46.3%. Single items drawn from validated measures were the most frequent method of assessing SI (n = 20, 45.5%); additional methods included validated measures and psychological interviews. Commonly identified risk factors for SI included age, sex, and disease/treatment-related characteristics, as well as psychological constructs including depression, anxiety, hopelessness, existential distress, and social support. SIGNIFICANCE OF RESULTS: Assessment of SI in patients with cancer is the concern of researchers worldwide. Prevalence of SI varied with study population and was likely influenced by the method of assessment. Psychological distress consistently predicted SI. Increasing awareness of demographic, clinical, and psychological associations is critical for risk assessment and intervention development.
Subject(s)
Neoplasms/complications , Suicidal Ideation , Humans , Neoplasms/psychology , Prevalence , Risk Assessment/methods , Risk FactorsABSTRACT
OBJECTIVE: The purpose of this cross-sectional study was to identify the neuropsychological underpinnings of decision-making capacity in terminally ill patients with advanced cancer. METHOD: Participants were 108 English-speaking adults. More than half (n = 58) of participants had a diagnosis of advanced cancer and were receiving inpatient palliative care; the rest were healthy adults. Participants completed a measure of decision-making capacity that assesses four legal standards of capacity (Choice, Understanding, Appreciation, and Reasoning), and several measures of neuropsychological functioning. RESULTS: Patients with terminal cancer were significantly more impaired on measures of capacity and neuropsychological functioning. Surprisingly, in the terminally ill sample, there were no significant correlations between neuropsychological functioning and decision-making capacity. CONCLUSION: The terminally ill sample exhibited high levels of neuropsychological impairment across multiple cognitive domains. However, few of the measures of neuropsychological functioning were significantly associated with performance on the decisional capacity subscales in the terminally ill sample. It is possible that end-of-life decisional capacity is governed by general, rather than domain-specific, cognitive abilities.
Subject(s)
Decision Making , Neoplasms/psychology , Terminally Ill/psychology , Aged , Aged, 80 and over , Comprehension , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Neuropsychological Tests , Problem SolvingABSTRACT
BACKGROUND: Caregivers of patients with advanced diseases are known to have high levels of distress, including depression and anxiety. Recent research has focused on recognizing caregivers in need of psychosocial support to help them manage their distress. Evidenced-based technological interventions have the potential to aid caregivers in managing distress. OBJECTIVE: The objective of our study was to describe caregiver perceptions of the usability and acceptability, and their suggestions for future adaptations, of a mobilized psychoeducation and skills-based intervention. METHODS: This study was a part of a larger trial of a mobilized psychoeducation and skills-based intervention (Psychoeducation and Skills-Based Mobilized Intervention [Pep-Pal]) for caregivers of patients with advanced illness. This substudy used a mixed-methods analysis of quantitative data from all 26 intervention participants and qualitative data from 14 intervention caregivers who completed the Pep-Pal intervention. The qualitative semistructured individual interviews, which we conducted within the first 4 weeks after participants completed the intervention, assessed the acceptability and usability of Pep-Pal. Additionally, the qualitative interviews provided contextual evidence of how the intervention was helpful to interviewees in unanticipated ways. We conducted applied thematic analysis via independent review of transcripts to extract salient themes. RESULTS: Overall, caregivers of patients with advanced cancer deemed Pep-Pal to be acceptable in all Web-based sessions except for Improving Intimacy. Caregivers perceived the program to be of use across the areas they needed and in others that they had not anticipated. Caregiver recommendations of key changes for the program were to include more variety in caregiver actors in sessions, change the title of Improving Intimacy to Improving Relationships, provide an audio-only option in addition to video, and change the format of the mobilized website program to a stand-alone mobile app. CONCLUSIONS: The valuable feedback in key areas from individual interviews will be integrated into the final version of Pep-Pal that will be tested in a fully powered randomized clinical trial. TRIAL REGISTRATION: ClinicalTrials.gov NCT03002896; https://clinicaltrials.gov/ct2/show/NCT03002896 (Archived by WebCite at http://www.webcitation.org/76eThwaei).
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OBJECTIVE: Despite the clinical, ethical, and legal magnitude of end-of-life decision-making, the capacity of terminally ill patients to make the medical decisions they often face is largely unknown. In practice, clinicians are responsible for determining when their patients are no longer competent to make treatment decisions, yet the accuracy of these assessments is unclear. The purpose of this study was to explore decision-making capacity and its assessment in terminally ill cancer patients. METHODS: Fifty-five patients with advanced cancer receiving inpatient palliative care and 50 healthy adults were administered the MacArthur Competence Assessment Tool for Treatment (MacCAT-T) to evaluate decision-making capacity with regard to the four most commonly used legal standards: Choice, Understanding, Appreciation, and Reasoning. Participants made a hypothetical treatment decision about whether to accept artificial nutrition and hydration for treatment of cachexia. Participants' physicians independently rated their decision-making capacity. RESULTS: Terminally ill participants were significantly more impaired than healthy adults on all MacCAT-T subscales. Most terminally ill participants were able to express a treatment choice (85.7%), but impairment was common on the Understanding (44.2%), Appreciation (49.0%), and Reasoning (85.4%) subscales. Agreement between physician-rated capacity and performance on the MacCAT-T subscales was poor. CONCLUSIONS: The use of the MacCAT-T revealed high rates of decisional impairment in terminally ill participants. Participants' physicians infrequently detected impairment identified by the MacCAT-T. The findings from the present study reinforce the need for engagement in advance care planning for patients with advanced cancer.
Subject(s)
Decision Making , Mental Competency , Neoplasms/psychology , Terminally Ill/psychology , Aged , Case-Control Studies , Female , Humans , Informed Consent , Male , Middle Aged , Neoplasms/therapy , Patient Participation , Prospective Studies , Socioeconomic FactorsABSTRACT
Desire for hastened death (DHD) represents a wish to die sooner than might occur by natural disease progression. Efficient and accurate assessment of DHD is vital for clinicians providing care to terminally ill patients. The Schedule of Attitudes Toward Hastened Death (SAHD) is a commonly used self-report measure of DHD. The goal of this study was to use methods grounded in item response theory (IRT) to analyze the psychometric properties of the SAHD and identify an abbreviated version of the scale. Data were drawn from 4 studies of psychological distress at the end of life. Participants were 1,076 patients diagnosed with either advanced cancer or AIDS. The sample was divided into 2 subsamples for scale analysis and development of the shortened form. IRT was used to estimate item parameters. A 6-item version of the SAHD (SAHD-A) was identified through examination of item parameter estimations. The SAHD-A demonstrated adequate convergent validity. Receiver operating characteristic analyses indicated comparable cut scores to identify patients with high levels of DHD. These analyses support the utility of the SAHD-A, which can be more easily integrated into research studies and clinical assessments of DHD. (PsycINFO Database Record
Subject(s)
Acquired Immunodeficiency Syndrome/psychology , Attitude to Death , Neoplasms/psychology , Terminally Ill/psychology , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Models, Theoretical , Motivation , Palliative Care , Psychometrics , Reproducibility of Results , Surveys and QuestionnairesABSTRACT
OBJECTIVE: Young adults with cancer experience high levels of psychological distress. Group interventions for cancer patients have been effective in reducing levels of psychological distress but suffer from high levels of attrition and serve a limited geographic area. In a quality-improvement project, we converted an existing in-person support group to a telemedicine format in the hopes of improving attendance and reducing geographic disparities in access to care. METHOD: Eight young adults (18-40 years) with cancer were recruited from across Colorado. Participants received a tablet equipped with Wi-Fi and downloaded an HIPAA-compliant video-conferencing application. Participants attended six weekly supportive psychotherapy sessions. RESULTS: Participants found the group to be beneficial: the technology worked, they enjoyed the group format, and they would recommend it to others. The novel treatment interface allowed for low attrition rates due to the flexibility of a patient's location during the intervention. It allowed for provision of services to a geographically diverse population of medically ill young adults, as participants lived an average of 148 miles from the cancer center (range = 25-406 miles). SIGNIFICANCE OF RESULTS: Internet-based mental health care is an area of growing interest for providers, but few studies have evaluated its efficacy in patients with cancer, and even fewer in young adults with cancer. Incorporating technological advances into clinical practice will increase access to care, reduce geographic health disparities, and provide more consistent services.
Subject(s)
Health Services Accessibility/standards , Neoplasms/psychology , Psychotherapy, Group/methods , Quality Improvement/standards , Telemedicine/methods , Adolescent , Adult , Colorado , Female , Humans , Male , Neoplasms/therapy , Program Evaluation/methods , Psychotherapy, Group/standards , Self-Help Groups , Surveys and QuestionnairesABSTRACT
Sickle cell disease (SCD) is a hereditary hemoglobinopathy that affects over 100,000 people in the United States. Patients with SCD are known to experience suboptimal health-related quality of life (HRQoL). In addition to the physical manifestations of SCD, psychological and social stress, along with academic difficulties, secondary to the chronicity of the disease and its complications often affect patients with SCD. Although medical therapy of SCD has improved, allogeneic hematopoietic cell transplantation (allo-HCT) remains the only curative therapy. The objective of this study was to measure HRQoL before and after allo-HCT by assessing physical, psychological, and social functioning in patients with SCD who have undergone reduced-toxicity conditioning (busulfan/fludarabine/alemtuzumab) followed by allo-HCT. Patients < 21 years of age undergoing allo-HCT (matched siblings and unrelated donors) for SCD and their primary caregiver were enrolled using either the English or Spanish version of the PedsQoL 4.0. Data were collected at 3 time points: before allo-HCT and on days 180 and 365 after allo-HCT. The change in HRQoL from baseline was assessed with unadjusted and adjusted mixed-effects models in which subjects were treated as random effects, and variance component structure was used. Seventeen patients and 23 primary caregivers were enrolled and reported a mean overall HRQoL of 66.05 (SD, 15.62) and 72.20 (SD, 15.50) at baseline, respectively. In the patient-reported analysis with adjusted mixed-effects models, the estimated improvements in overall HRQoL were 4.45 (SE, 4.98; P = .380) and 16.58 (SE, 5.06; P = .003) at 180 and 365 days, respectively, after allo-HCT. For parent-reported overall HRQoL, the estimated improvements were 1.57 (SE, 4.82; P = .747) and 9.28 (SE, 4.62; P = .053) at 180 and 365 days, respectively, after allo-HCT. Similar results were found across the physical, social, and emotional HRQoL domains with mixed-effects models after adjustment of demographic and medical variables. In addition to the alleviation of clinical manifestations of SCD, these patients demonstrated significant improvement in most aspects of HRQoL by 1 year after allo-HCT. These data represent the trajectory of HRQoL during the initial year of follow-up within this population and should be integrated into the decision-making process when considering allo-HCT in patients with SCD.
Subject(s)
Anemia, Sickle Cell/therapy , Hematopoietic Stem Cell Transplantation , Quality of Life , Adolescent , Adult , Allografts , Child , Child, Preschool , Female , Follow-Up Studies , Humans , MaleABSTRACT
OBJECTIVE: To date, no measure of social support has been developed specifically for either palliative care or oncology settings. The present study examined the psychometric properties of the Duke-University of North Carolina Functional Social Support Questionnaire (DUFSS) in order to (1) assess the adequacy of the scale in the context of severe medical illness and (2) evaluate whether a brief subset of items might generate roughly comparable utility. METHOD: The 14-item DUFSS was administered to 1,362 individuals with advanced cancer or AIDS. Classical test theory (CTT) and item response theory (IRT) analyses were utilized to develop an abbreviated version of the DUFSS that maintained adequate reliability and validity and might increase the feasibility of its administration in a palliative care setting. The reliability and concurrent validity of the DUFSS-5 were evaluated in a separate validation sample of patients with advanced cancer. RESULTS: Analyses generated a five-item version of the DUFSS (the DUFSS-5) that collapsed response levels into only three options, instead of five. Correlations between the DUFSS-5 and measures of depression, quality of life, and desire for hastened death, as well as regression models testing the main-effect and buffering models of social support, provided support for the utility of the DUFSS-5. SIGNIFICANCE OF RESULTS: Both the DUFSS and the abbreviated DUFSS-5 appear to have adequate reliability and validity in this setting. Moreover, the DUFSS-5 represents a potentially important option for healthcare researchers, particularly for those working in palliative care settings where issues of patient burden are paramount. Such analyses are critical for advancing the development and refinement of psychosocial measures, but have often been neglected.
Subject(s)
Palliative Care/psychology , Psychometrics , Quality of Life/psychology , Social Support , Terminally Ill/psychology , Acquired Immunodeficiency Syndrome/psychology , Adult , Aged , Aged, 80 and over , Depression/psychology , Female , Humans , Male , Middle Aged , Neoplasms/psychology , Reproducibility of ResultsABSTRACT
OBJECTIVE: Patients with terminal illness often face important medical decisions that may carry ethical and legal implications, yet they may be at increased risk for impaired decisional capacity. This study examined the prevalence of impairment on the four domains of decisional capacity relevant to existing legal standards. METHOD: Twenty-four adults diagnosed with a terminal illness completed the MacArthur Competence Assessment Tool for Treatment, a semi-structured measure of decision-making capacity and measures of cognitive functioning and psychological distress. RESULTS: Approximately one third of the sample demonstrated serious impairment on at least one domain of decisional capacity. The greatest proportion of impairment was found on subscales that rely heavily on verbal abilities. Decisional capacity was significantly associated with cognitive functioning and education, but not with symptoms of anxiety or depression. CONCLUSIONS: This study is the first to examine decisional capacity in patients with terminal illness relative to legal standards of competence. Although not universal, decisional impairment was common. Clinicians working with terminally ill patients should frequently assess capacity as these individuals are called on to make important medical decisions. Comprehensive assessment will aid clinicians in their responsibility to balance respect for patient autonomy with their responsibility to protect patients from harm resulting from impaired decisional capacity.
Subject(s)
Decision Making/physiology , Mental Competency/psychology , Terminally Ill/psychology , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Pilot Projects , Psychometrics/instrumentation , Terminal Care/standardsABSTRACT
This systematic review synthesizes the complex literature on prognostic awareness in cancer. A total of 37 studies examining cancer patients' understanding of their prognosis were included. Prognostic awareness definitions and assessment methods were inconsistent across studies. A surprisingly high percentage of patients (up to 75%) were unaware of their poor prognosis, and in several studies, even their cancer diagnosis (up to 96%), particularly in studies conducted outside of North America. This review highlights surprisingly low rates of prognostic awareness in patients with advanced cancer as well as discrepancies in prognostic awareness assessment, suggesting the need for empirically validated measures of prognostic awareness.
Subject(s)
Awareness/physiology , Neoplasms/psychology , Prognosis , HumansABSTRACT
For terminally ill cancer patients, hope and hopelessness are constructs that significantly impact quality of life. The aim of this study was to examine the relationship between hope and hopelessness in advanced cancer and to identify factors that maintain hope and increase vulnerability to hopelessness. Semistructured interviews were conducted with 22 terminally ill cancer patients. Interview transcripts were analyzed using thematic content analysis to identify patient definitions of these terms and associated cognitions and emotions. Hope and hopelessness were identified as distinct, often co-occurring, and dialectically interacting constructs. The relationship between hope and hopelessness often balanced on acceptance, perceived as diametrically opposed to hopelessness, and conducive to redirecting hope toward new goals. Positive interpersonal relationships enhanced hope, and uncontrolled physical pain increased vulnerability to hopelessness.
Subject(s)
Hope , Neoplasms/psychology , Adult , Aged , Aged, 80 and over , Attitude to Death , Depressive Disorder, Major/etiology , Depressive Disorder, Major/psychology , Family/psychology , Female , Humans , Interviews as Topic , Male , Middle Aged , Pain/psychologyABSTRACT
CONTEXT: Anxiety in terminal cancer is linked to diminished quality of life, yet overall it is poorly understood with regard to prevalence and relationship to other aspects of psychological distress. OBJECTIVES: This study examines anxiety in terminally ill cancer patients, including the prevalence of anxiety symptoms, the relationship between anxiety and depression, differences in anxiety between participants receiving inpatient palliative care and those receiving outpatient care, and characteristics that distinguish highly anxious from less anxious patients. METHODS: Participants were 194 patients with terminal cancer. Approximately half (n=103) were receiving inpatient care in a palliative care facility and half (n=91) were receiving outpatient care in a tertiary care cancer center. The Hospital Anxiety and Depression Scale was used to assess anxiety and depression, and was administered along with measures of hopelessness, desire for hastened death, and social support. RESULTS: Moderately elevated anxiety symptoms were found in 18.6% of participants (n=36) and 12.4% (n=24) had clinically significant anxiety symptoms. Level of anxiety did not differ between the two treatment settings. However, participants receiving palliative care reported significantly higher levels of depression and desire for hastened death. A multivariate prediction model indicated that belief in an afterlife, social support, and anxiolytic and antidepressant use were unique, significant predictors of anxiety. CONCLUSION: Severity of anxiety symptoms did not differ between the study sites, suggesting that anxiety may differ from depression and desire for hastened death in the course that it takes over the duration of terminal cancer.
Subject(s)
Anxiety/psychology , Neoplasms/psychology , Terminally Ill/psychology , Aged , Attitude to Death , Death , Depression/psychology , Female , Forecasting , Humans , Inpatients , Male , Middle Aged , Outpatients , Palliative Care , Psychiatric Status Rating Scales , Religion , Social Support , Socioeconomic Factors , Terminal CareABSTRACT
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.
Subject(s)
Depression/diagnosis , Neoplasms/psychology , Psychiatric Status Rating Scales , Terminally Ill/psychology , Adult , Aged , Aged, 80 and over , Depression/psychology , Factor Analysis, Statistical , Female , Humans , Male , Middle Aged , Palliative Care/psychology , Psychometrics , Reproducibility of Results , Surveys and Questionnaires , Young AdultABSTRACT
OBJECTIVES: To explore the extent to which men treated for early stage, localized prostate cancer maintain or discontinue CAM therapies over time and to investigate external as well as psychological factors that are related to maintenance or discontinuation of CAM therapies. DESIGN: A survey questionnaire was mailed to a subset of participants (N=225) from an earlier study that investigated the initiation and use of CAM therapies after a prostate cancer diagnosis. SETTING: Participants were recruited from a comprehensive cancer centre and affiliated network hospitals following treatment for early stage, localized prostate cancer. MAIN OUTCOME MEASURES: Usage history for the 17 CAM therapies most commonly used by prostate cancer patients. Likert-scale endorsement of reasons for discontinuing or not trying CAM therapies. A discontinuation index (i.e., the ratio of instances that the therapy was discontinued to instances that it was attempted) was computed for each therapy. RESULTS: CAM usage decreased by approximately one quarter within two years following treatment for early stage, localized prostate cancer. Men most frequently cited beliefs that discontinued CAM therapies were ineffective, generally unsuitable, or harmful, despite a lack of objective criteria for making these judgments. CONCLUSIONS: The increase in CAM usage that tends to occur immediately after diagnosis subsides within two years after prostate cancer treatment. Although lack of confidence in CAM's effectiveness characterized all discontinuations, higher effort therapies tend to be discontinued more quickly than lower effort therapies.