Karen Baker

Quality of life and pain in premenopausal women with major depressive disorder: The POWER Study

BackgroundWhereas it is established that organic pain may induce depression, it is unclear whether pain is more common in healthy subjects with depression. We assessed the prevalence of pain in premenopausal women with major depression (MDD). Subjects were 21- to 45-year-old premenopausal women with MDD (N = 70; age: 35.4 +/- 6.6; mean +/- SD) and healthy matched controls (N = 36; age 35.4 +/- 6.4) participating in a study of bone turnover, the P.O.W.E.R. (P remenopausal, O steopenia/Osteoporosis, W omen, Ale ndronate, Depr ession) Study.MethodsPatients received a clinical assessment by a pain specialist, which included the administration of two standardized forms for pain, the Brief Pain Inventory – Short Form, and the Initial Pain Assessment Tool, and two scales of everyday stressors, the Hassles and Uplifts Scales. In addition, a quality-of-life instrument, the SF-36, was used. The diagnosis of MDD was established by a semi-structured interview, according to the DSM-IV criteria. Substance P (SP) and calcitonin-gene-related-peptide (CGRP), neuropeptides which are known mediators of pain, were measured every hour for 24 h in a subgroup of patients (N = 17) and controls (N = 14).ResultsApproximately one-half of the women with depression reported pain of mild intensity. Pain intensity was significantly correlated with the severity of depression (r2 = 0.076; P = 0.04) and tended to be correlated with the severity of anxiety, (r2 = 0.065; P = 0.07), and the number of depressive episodes (r2 = 0.072; P = 0.09). Women with MDD complained of fatigue, insomnia, and memory problems and experienced everyday negative stressors more frequently than controls. Quality of life was decreased in women with depression, as indicated by lower scores in the emotional and social well-being domains of the SF-36. SP (P < 0.0003) and CGRP (P < 0.0001) were higher in depressed subjects.ConclusionWomen with depression experienced pain more frequently than controls, had a lower quality of life, and complained more of daily stressors. Assessment of pain may be important in the clinical evaluation of women with MDD. SP and CGRP may be useful biological markers in women with MDD.

The Nature of Life-Transforming Changes Among Cancer Survivors:

Some cancer survivors report positive subjective changes they describe as “life transforming.” We used a grounded theory approach to identify the content, underlying process, and identifying characteristics of self-defined “life-transforming” changes (LTCs) reported by 9 cancer survivors. To actualize their hopes for improvement, participants used a self-guided process centered on pragmatic action: researching options, gaining experience, and frankly evaluating results. Many participants discovered unanticipated personal abilities and resources, and those became highly useful in coping with other challenges apart from cancer. This made the increased personal abilities and resources “life transforming” rather than being substantially limited to reducing cancer-related problems. The action-oriented features and processes of LTCs seemed to be more fully described by experiential learning theory than by posttraumatic growth and coping. Supportive intervention to facilitate positive change processes could decrease suffering and enhance positive psychosocial and spiritual outcomes for cancer survivors.

Oral ketamine in the palliative care setting: a review of the literature and case report of a patient with neurofibromatosis type 1 and glomus tumor-associated complex regional pain syndrome.

Ketamine, an N-methyl-D-aspartate (NMDA) receptor antagonist, has been shown to be effective not only for its anesthetic properties but also for the analgesic and opiate-sparing effects. However, data on efficacy and safety of oral ketamine for the treatment of neuropathic or cancer pain syndromes is limited with most of the evidence based on small clinical trials and anecdotal experiences. In this review, we will analyze the clinical data on oral ketamine in the palliative care setting. After an extensive search using five major databases, a total of 19 relevant articles were included. No official clinical guidelines for the use of oral ketamine in this patient population were found. Studies on oral ketamine for cancer and neuropathic pain have shown mixed results which could be partially due to significant differences in hepatic metabolism. In addition, we will include a case report of a 38-year-old female with neurofibromatosis type 1 (NF1) with history of chronic, severe pain in her fingertips secondary to multiple glomus tumors which evolved into CRPS resistant to multiple therapies but responsive to oral ketamine. Based on our experience with oral ketamine, this drug should be administered after an intravenous trial to monitor response and side effects in patients with an adequate functional status. However, patients in the palliative care and hospice setting, especially the one at the end of their lives, may also benefit from oral ketamine even if an intravenous trial is not feasible.

Increasing the Number of Outpatients Receiving Spiritual Assessment: A Pain and Palliative Care Service Quality Improvement Project

BACKGROUND Spirituality is a patient need that requires special attention from the Pain and Palliative Care Service team. This quality improvement project aimed to provide spiritual assessment for all new outpatients with serious life-altering illnesses. MEASURES Percentage of new outpatients receiving spiritual assessment (Faith, Importance/Influence, Community, Address/Action in care, psychosocial evaluation, chaplain consults) at baseline and postinterventions. INTERVENTION Interventions included encouraging clinicians to incorporate adequate spiritual assessment into patient care and implementing chaplain covisits for all initial outpatient visits. OUTCOMES The quality improvement interventions increased spiritual assessment (baseline vs. postinterventions): chaplain covisits (25.5% vs. 50%), Faith, Importance/Influence, Community, Address/Action in care completion (49% vs. 72%), and psychosocial evaluation (89% vs. 94%). CONCLUSIONS/LESSONS LEARNED Improved spiritual assessment in an outpatient palliative care clinic setting can occur with a multidisciplinary approach. This project also identifies data collection and documentation processes that can be targeted for improvement.

Establishing a palliative care program in a research center: Evolution of a model

Just as health is more than absence of illness, so too is palliative care much more than the absence of disturbing symptoms. The two quotes above demonstrate Pain and Palliative Care team’s philosophy that supports our patients’ search for normalcy, comfort, and balance as patients pursue novel experimental treatments for advanced disease. In this paper we describe the necessity of and facilitation of integrating palliative care into a research model of practice at the National Institutes of Health. The National Institutes of Health (NIH) is an agency of the United States Department of Health and Human Services with initiatives that are funded by an approved congressional budget. The NIH has an organizational mission which is accomplished through conducting research, supporting research of non-federal scientists, training research investigators, and fostering communication of medical information. The goal of the NIH is to uncover new knowledge that will lead to better health, to prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold. The NIH is comprised of 23 Institutes and Centers, including the National Cancer Institute. The Warren Grant Magnuson Clinical Center, the hospital which supports the intramural research mission of the institutes, is where the Pain and Palliative Care Service (PPCS) is housed. The Clinical Center has an annual census of 7,000 inpatients and 68,000 outpatients. All patients have consented to participate in clinical trials. The goal of science and research is to generate reproducible and objective knowledge which can be applied in any clinical setting. Clearly, this is critical in helping cure disease. However, the primary focus of research and science is not necessarily to meet individual patient needs. It is also clear that in order to relieve suffering, the essence of palliative care, one must tailor care to meet the individual’s needs. In recognition of this mission the PPCS at the NIH was developed in August 2000. Since its creation, this service and its interdisciplinary team members

An assessment of meaning in life-threatening illness: development of the Healing Experience in All Life Stressors (HEALS)

Context Patients with life-threatening or chronic illness report an experience of increased positive psychological, social, and/or spiritual change during diagnosis and/or treatment of their illness, even in the face of unfavorable prognosis. This transformation begins through the ability to make their life meaningful by forming meaningful connections that emerge through self-introspection and relationships with a divine entity, nature, and other people. The Healing Experience in All Life Stressors (HEALS) assessment provides a way to identify distress-causing changes that may interfere with the development of meaning and psycho–social–spiritual homeostasis. Objective Preliminary examination of responses to items on the HEALS and examination of the factor structure. Method The 48-item HEALS questionnaire was developed using a multistep process: literature review for concept development, item generation from qualitative data, and face and content validity by expert panel. In the current study, HEALS was completed by 100 patients diagnosed with life-limiting disease and seen by the palliative care team at a large research institution in the US. Exploratory factor analysis techniques were used to determine scale structure of the instrument. Results Outcome testing of sample adequacy using Kaiser–Meyer–Olkin statistic was 0.75, which exceeds the recommended value of 0.60. The HEALS show very good internal consistency with a Cronbach’s a of 0.94. Overall results of the exploratory factor analysis established a four-factor questionnaire: 1) religion; 2) spirituality, demonstrated by a) interaction with a religious community and b) belief in higher power; 3) intrapersonal; and 4) interpersonal relationships expressed through psychological changes resulting in enhanced outlook and improvement in relationships with family and friends. Conclusion This study involved the initial step to commence the process of scale validation, with promising outcomes identifying subscales as an effective way to assess the construct of healing. These findings support further examination using cognitive appraisal and confirmatory factor analysis.

Nurses’ Interest in Independently Initiating End-of-Life Conversations and Palliative Care Consultations in a Suburban, Community Hospital

Background: Patients who receive early palliative care consults have clinical courses and outcomes more consistent with their goals. Nurses have been shown to be advocates for early palliative care involvement and are able to lead advanced care planning discussions. Objective: The purpose of this study was to assess whether after a brief educational session, nurses at a suburban, community hospital could demonstrate knowledge of palliative care principles, would want to independently initiate end-of-life conversations with patients and families, and would want to place specialty palliative care consults. Design: Four 1 hour presentations were made at 4 nursing leadership council meetings from November through December 2015. Anonymous pre- and post-presentation surveys were distributed and collected in person. Setting/Participant: Nonprofit, suburban, community hospital in Maryland. Participants were full-time or part-time hospital employees participating in a nursing leadership council who attended the presentation. Measurements: We compared responses from pre- and post-presentation surveys. Results: Fifty nurses (19 departments) completed pre-presentation surveys (100% response rate) and 49 nurses completed post-presentation surveys (98% response rate). The average score on 7 index questions increased from 71% to 90%. After the presentations, 86% strongly agreed or agreed that nurses should be able to independently order a palliative care consult and 88% strongly agreed or agreed with feeling comfortable initiating an end-of-life conversation. Conclusion: Brief educational sessions can teach palliative care principles to nurses. Most participants of the study would want to be able to directly consult palliative care and would feel comfortable initiating end-of-life conversations after this educational session.

Qualitative inquiry: a method for validating patient perceptions of palliative care while enrolled on a cancer clinical trial

BackgroundPalliative care is a vital component of patient-centered care. It has increasingly become central to the management and care of seriously ill patients by integrating physical, psychosocial, and spiritual supportive services. Through qualitative inquiry, this paper examines cancer patients’ perceptions of the process and outcomes of the pain and palliative care consultative services they received while enrolled in a clinical trial.MethodsA qualitative analysis of open-ended questions was conducted from a sub-sample of patients (n = 34) with advanced cancers enrolled in a randomized controlled trial exploring the efficacy of a palliative care consult service. Two open-ended questions focused on patient perceptions of continued participation on their primary cancer clinical trials and their perceptions of interdisciplinary communication.ResultsThree overarching themes emerged when asked whether receiving pain and palliative care services made them more likely to remain enrolled in their primary cancer clinical trial: patients’ past experiences with care, self-identified personal characteristics and reasons for participation, and the quality of the partnership. Four themes emerged related to interdisciplinary communication including: the importance of developing relationships, facilitating open communication, having quality communication, and uncertainty about communication between the cancer clinical trial and palliative care teams.ConclusionsOur findings suggest the importance of qualitative inquiry methods to explore patient perceptions regarding the efficacy of palliative care services for cancer patients enrolled in a cancer clinical trial. Validation of patient perceptions through qualitative inquiry regarding their pain and palliative care needs can provide insight into areas for future implementation research.Trial registrationNIH Office of Human Subjects Research Protection OHSRP5443 and University of Pennsylvania 813365