Journal of Pain and Symptom Management - Articles in Press

Detecting the Emergence of Chronic Pain in Sickle-Cell Disease - Corrected Proof

2012-05-14

Abstract: Context: Sickle-cell disease (SCD) is an inherited hematological disease marked by intense pain. Early in life the pain is episodic, but it becomes increasingly chronic in many cases. Little is known about this emergence of a chronic pain state.Objectives: The goal of this study was to determine whether adult SCD patients whose pain is still largely episodic show early signs of the disturbed pain processing (hyperalgesia and increased temporal summation) and cognition (hypervigilance and catastrophizing) that are characteristic of a chronic pain state.Methods: SCD patients (n=22) and healthy controls (n=52) received noxious pressure stimulation for up to three minutes and periodically reported pain intensity and unpleasantness on 0–10 scales, allowing the rate of pain increase (temporal summation) to be determined. Pain intensity discrimination also was measured, and attitudes toward pain were assessed.Results: There were no overall differences in pain ratings or temporal summation between patient and control groups. However, patients’ experimental pain ratings tended to increase with age and those reporting a history of very painful episodes showed particularly rapid temporal summation of pain unpleasantness. Patients were significantly impaired at discriminating intensities of noxious stimulation. Patients were more hypervigilant than controls, but catastrophizing was elevated only during pain episodes.Conclusion: Most SCD patients whose pain remits entirely between episodes are not in a chronic pain state, but some—those who are older and have a history of highly painful episodes—appear to be transitioning into it. These early signs of disturbed processing may aid clinicians seeking to forestall disease progression.

Symptom Burden and Associated Factors in Renal Transplant Patients in the U.K. - Corrected Proof

Maryam Afshar, Irene Rebollo-Mesa, Emma Murphy, Fliss E.M. Murtagh, Nizam Mamode — 2012-05-14

Abstract: Context: Renal transplantation is gold standard care in end-stage kidney disease, but little is known about symptom prevalence in transplanted patients.Objectives: This study assesses symptom prevalence in this population.Methods: A U.K.-based, cross-sectional symptom survey of end-stage kidney disease patients transplanted more than one year previously. Patient-reported data were collected using the renal Patient Outcome Scale. Demographic/clinical data were also collected, including estimated glomerular filtration rate (eGFR), renal diagnosis, and comorbidity.Results: One hundred ten patients participated; mean age was 47 years (SD 13.6), and mean eGFR was 46mL/min (SD 16.8, range 14–101). Symptom burden was high, with a mean of seven symptoms, but marked variance (SD 5.2, range 0–22). The most prevalent symptoms were weakness (56%, 95% CI 47–65), difficulty sleeping (46%, 95% CI 37–56), dyspnea (42%, 95% CI 33–51), feeling anxious (36%, 95% CI 28–46), and drowsiness (36%, 95% CI 28–46). Certain symptoms—weakness, difficulty sleeping, dyspnea, and drowsiness—were commonly reported as severe. A significant inverse relationship between renal function, as measured by eGFR, and number of symptoms (P<0.05) emerged.Conclusion: For renal transplant recipients, symptom burden is similar to dialysis, although with less pain, anorexia, and immobility. Routine symptom assessment should be undertaken in transplant patients to identify these often undisclosed symptoms.

What Can We Learn About the Spiritual Needs of Palliative Care Patients From the Research Literature? - Corrected Proof

Mark Cobb, Christopher Dowrick, Mari Lloyd-Williams — 2012-05-11

Abstract: Context: Spirituality is a distinctive subject within palliative care practice and literature, but research to date is relatively undeveloped in this field and studies often throw more light on conceptual and methodological issues than producing reliable data for clinical practice.Objectives: To determine what is known about the spiritual needs of palliative care patients from the evidence presented in published research.Methods: Specialist online databases were interrogated for primary empirical studies of patients with a chronic disease unresponsive to curative treatment. Studies that only used a proxy for the patient or reported expert opinion were excluded. Each study was critically appraised for quality and the strength of its evidence to determine if any data could be pooled.Results: Thirty-five studies were identified, equating to a total of 1374 patients. Study populations were typically people with advanced-stage cancer, older than 60 years, who are English speaking, and with a Christian or Jewish religious affiliation, reflecting the predominance of Anglo-American studies. Studies fell into two groups: those that investigated the nature of spiritual experience and those that examined the relationship of spirituality with other phenomena. The evidence was insufficiently homogeneous to pool.Conclusion: Relevant accounts of what spirituality means for palliative care patients and evidence of how it operates in the lives of people with life-limiting disease can be derived from research. Studies to date are limited by reductive representations of spirituality and the conduct of research by health professionals within health care communities demarcated from disciplines and interpretive traditions of spirituality.

Experiences With Advanced Cancer Among Latinas in a Public Health Care System - Corrected Proof

2012-05-11

Abstract: Context: Cultural dimensions related to illness are triggered at significant times in an illness trajectory, such as at illness onset or when death approaches. These factors influence views on how illness is understood and managed, which is likely more difficult for minority populations. While Latinos experience barriers to high-quality health care, late-stage cancer diagnoses, and poor health outcomes, little is known about their experiences with advanced, life-threatening cancers.Objectives: We examined Latinas’ experiences with advanced, metastatic cancers to identify sociocultural beliefs that influenced their care.Methods: We interviewed 24 Latinas taking part in a randomized controlled trial focused on improving quality-of-life outcomes for co-occurring cancer and depression and explored their beliefs about the cause, course, and cure of cancer. This study used a phenomenological analytical approach to explore women’s lived experiences of having advanced cancer.Results: Themes revealed issues about experiencing advanced cancer that included the following: initial reactions to cancer, disbelief about the lack of pain, economic impact, beliefs about the cause, coping with cancer, beliefs about the cure, and confusion about cancer severity. Sociocultural factors influence misunderstanding and confusion about cancer care but also can be a source of strength.Conclusion: Providers need to become culturally sensitive to the needs of underserved Latinas. Denial or ignorance of these issues can create other problems, such as gaps in patient-centered decision making from diagnosis through the end of life.

Content Development for the Functional Assessment of Cancer Therapy-Multiple Myeloma: Use of Qualitative and Quantitative Methods for Scale Construction - Corrected Proof

2012-05-11

Abstract: Context: Multiple myeloma (MM) is a common hematologic malignancy and associated with symptom burden and impairments in health-related quality of life (HRQL).Objectives: To develop a disease-specific, patient-reported outcome (PRO) measure for the assessment of HRQL among patients with MM as part of the Functional Assessment of Cancer Therapy (FACT) measurement system.Methods: HRQL concerns and symptoms associated with MM were tabulated based on a literature review, and 52 candidate PRO items were identified. Expert clinicians (n=13) rated 52 items on relevance to HRQL for MM patients (0–3 scale). Experts added 11 items for comprehensive PRO assessment in MM. A list of 63 candidate items was rated (0–3 scale) by 13 MM patients enrolled through the International Myeloma Foundation Web site. Qualitative data and quantitative item ratings were reviewed to select FACT-MM scale items.Results: Expert clinicians provided the highest HRQL relevance ratings for bone pain, bodily pain, difficulty walking (2.9), tiring easily (2.6), feeling discouraged (2.5), interference with activities and difficulty with self-care as a result of bone pain (2.5), and fatigue (2.5). Mean age of patients was 57 years; Eastern Cooperative Oncology Group performance status was 0 (38%), 1 (31%), or 2 (31%). Quantitative ratings by patients identified sexual function (1.3), uncertainty about health (1.2), fatigue (1.0), weight gain (1.0), and emotional concerns, such as worry about new symptoms and difficulty planning for the future (1.0) as most relevant to HRQL.Conclusion: The 14-item FACT-MM PRO measure was developed based on expert clinician and patient data, ensuring relevance to HRQL for MM patients.

Family’s Difficulties in Caring for a Cancer Patient at the End of Life at Home in Japan - Corrected Proof

Yoko Ishii, Mitsunori Miyashita, Kazuki Sato, Taketoshi Ozawa — 2012-05-11

Abstract: Context: Most people hoped for home care at the end of life and death at home in Japan. However, the rate for death at home from cancer in Japan is less than 10% of the total deaths of cancer patients.Objectives: The aim of this study was to investigate circumstances, difficulties, and correlated factors for family caregivers who provided care at home for a family member with terminal cancer.Methods: The Family’s Difficulty Scale for end-of-life home care questionnaire was sent to 395 bereaved family caregivers who had cared for a terminal cancer patient with the assistance of home services.Results: We obtained 306 responses for a response rate of 81%. The results showed that family caregivers had a high rate of difficulties related to “Patient’s pain and condition” (90%∼64%) and “Burden of care” (78%∼61%). A logistic regression analysis was performed on the data to examine factors related to the difficulties. More difficulties occurred for male caregivers (odds ratio [OR]=0.39, P=0.04) who did not prefer for the patient to die at home (OR=0.42, P=0.01).Conclusion: This study indicates that it is important for home care providers to introduce services to reduce care burden. In addition, a thorough explanation of the patient’s symptoms and condition is necessary to reduce distress and anxiety for family caregivers.

Informed Consent in Opioid Therapy: A Potential Obligation and Opportunity - Corrected Proof

Martin D. Cheatle, Seddon R. Savage — 2012-03-23

Abstract: Most patients receiving opioids for the spectrum of pain disorders tolerate opioids well without major complications. However, a subset of this population encounters significant difficulties with opioid therapy (OT). These problems include protracted adverse effects, as well as misuse, abuse, and addiction, which can result in significant morbidity and mortality and makes informed consent an important consideration. Opioid treatment agreements (OTAs), which may include documentation of informed consent, have been used to promote the safe use of opioids for pain. There is a debate regarding the effectiveness of OTAs in reducing the risk of opioid misuse; however, most practitioners recognize that OTAs provide an opportunity to discuss the potential risks and benefits of OT and establish mutually agreed-on treatment goals, a clear plan of treatment, and circumstances for continuation and discontinuation of opioids. Informed consent is an important component of an OTA but not often the focus of consideration in discussions of OTAs. This article examines the principles, process, and content of informed consent for OT of pain in the context of OTAs.

Physical Activity Monitoring: A Responsive and Meaningful Patient-Centered Outcome for Surgery, Chemotherapy, or Radiotherapy? - Corrected Proof

2012-01-24

Abstract: Context: In surgical and clinical oncology, there is a growing need for patient-centered outcomes that are responsive, meaningful, and fit for purpose.Objectives: The aim of this study was to validate physical activity (PA) monitoring as a responsive outcome measure at different stages of disease and treatment, by verifying correlations between PA, performance score, and quality of life (QoL).Methods: Daily life PA of 162 cancer patients, monitored by a device that records time sitting/lying, time standing, time walking, number of steps taken, and walking cadence, was compared with 20 healthy volunteers. In a subgroup of patients, functional status and QoL were assessed using the World Health Organization/Eastern Cooperative Oncology Group and the Karnofsky Performance Status scores and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30 (EORTC QLQ-C30) questionnaire.Results: The PA of patients with resectable gastrointestinal cancer did not differ significantly from controls. In contrast, patients with advanced cancer took 45% fewer steps and spent an extra 2.8 hours/day lying/sitting (P=0.001). Patients undergoing neoadjuvant chemotherapy and surgery (5–6 weeks after operation) experienced a similar reduction in PA. There were significant correlations between PA and the physical and role domains as well as fatigue subscale of the EORTC QLQ-C30 scale.Conclusion: Objective PA scores correlate significantly with disease stage, functional status, and QoL of patients with cancer. Therefore, activity monitoring can make meaningful objective estimates of patient function in response to cancer and its treatment and may provide surrogate outcomes of QoL.