paywalled: Preferences for outcomes associated with decisions to undergo or forego genetic testing for Lynch syndrome

Preferences for outcomes associated with decisions to undergo or forego genetic testing for Lynch syndrome

Abstract

BACKGROUND:

Current guidelines recommend offering genetic testing for Lynch syndrome to individuals whose tumors suggest this condition and to relatives of affected individuals. Little is known, however, regarding how patients view the prospect of such testing. In addition, data on preferences (utilities) for the potential outcomes of testing decisions for use in cost-effectiveness analyses are lacking.

METHODS:

Time tradeoff utilities were elicited for 10 potential outcomes of Lynch syndrome testing decisions and 3 associated cancers from 70 participants, representing a range of knowledge about and experiences with Lynch syndrome.

RESULTS:

Highest mean utilities were assigned to scenarios in which only the assessor's sibling had Lynch-associated colorectal cancer (ranging from 0.669 ± 0.231 to 0.760 ± 0.220). Utilities assigned to scenarios in which the assessor had Lynch-associated colorectal cancer ranged from 0.605 ± 0.252 to 0.682 ± 0.246, whereas the lowest mean utilities were assigned to 2 of the general cancer states (0.601 ± 0.238 and 0.593 ± 0.272 for colorectal and ovarian cancer respectively). Only 43% of the sample assigned higher values to undergoing Lynch testing and receiving negative results versus foregoing Lynch testing, whereas 50% assigned higher values to undergoing rather than foregoing surgery to prevent a subsequent cancer.

CONCLUSIONS:

Genetic testing for Lynch syndrome, regardless of results, can have profound effects on quality of life; the utilities we collected can be used to incorporate these effects into cost-effectiveness analyses. Importantly, preferences for the potential outcomes of testing vary substantially, calling into question the extent to which patients would avail themselves of such testing if it were offered to them. Cancer 2012. © 2012 American Cancer Society

Structural and Functional Imaging and Cognitive Functions in Ovarian Cancer - Full Text View - ClinicalTrials.gov (clinical trials)

Structural and Functional Imaging and Cognitive Functions in Ovarian Cancer - Full Text View - ClinicalTrials.gov

This study is currently recruiting participants.

Verified May 2012 by Memorial Sloan-Kettering Cancer Center

First Received on April 30, 2012.   Last Updated on May 2, 2012   History of Changes

Sponsor:	Memorial Sloan-Kettering Cancer Center
Collaborator:	Weill Medical College of Cornell University
Information provided by (Responsible Party):	Memorial Sloan-Kettering Cancer Center ( Memorial Sloan-Kettering Cancer Center )
ClinicalTrials.gov Identifier:	NCT01591772

  Purpose

The purpose of this study is to learn about possible changes in brain anatomy and function, and in thinking abilities, such as memory skills, in patients with ovarian cancer who receive treatment with chemotherapy. Cancer patients treated with chemotherapy may experience changes in thinking abilities, and these may interfere with quality of life. Most of the research to date has involved patients with breast cancer, and there are no studies in women with ovarian cancer looking at at treatment-related changes in brain anatomy and function.

press release: Moffitt Cancer Center researchers: Quality of life as important as quantity of life

Moffitt Cancer Center researchers: Quality of life as important as quantity of life

"The question of how well people are surviving cancer is as important as how long they survive cancer," .....


Prolonged fatigue after treatment


In a recent study published in Cancer, researchers from Moffitt found that when patients treated with chemotherapy or chemotherapy and radiation for breast cancer were compared to a control group who had not had cancer, the patients who had experienced chemotherapy and/or radiotherapy had more fatigue. These patients also had fatigue that lasted years after their therapy.
"This finding was contrary to our expectations," Jacobsen said. "Conventional thinking is that patients receiving chemotherapy would, over time, experience less fatigue and would eventually see their fatigue diminish to the levels of controls who had not had cancer, or to the level of fatigue they had prior to their chemotherapy.".......

abstract: Long-term adjustment of early-stage ovarian cancer survivors

Long-term adjustment of early-stage ovarian cancer survivors:

Abstract

The objectives of this study were to describe the quality of life (QOL), consequences of treatment, complementary therapy use, and factors correlating with psychologic state in 58 survivors of early-stage ovarian cancer since little is known about the QOL of early-stage ovarian cancer survivors. Survivors were interviewed using standardized measures to assess physical, psychologic, social, and sexual functioning; impact of cancer on socioeconomic status; and complementary therapy use. Survivors reported good physical QOL scores and few unmet needs. However, menopausal symptoms and negative impact on sexuality were reported. Less than 10% of survivors reported either an interest in sex or were sexually active. Psychologic assessment yielded a subset of 26% of patients with scores suggestive of posttraumatic stress disorder (PTSD) and 40% of survivors scored below the norm on the Mental Health Inventory-17 Survey. One third of patients required treatment for family/personal problems and took antianxiety medications. About 56% of survivors reported fear of cancer recurrence and 59% reported anxiety when their CA125 is tested. Better mental health was significantly related to less fatigue (Functional Assessment of Cancer Therapy [FACT]—fatigue, r = 0.61, P < 0.0001), less pain (European Organisation for Research and Treatment of Cancer [EORTC], r =−0.54, P < 0.0001), fewer stressful life events (Life Event Scale, r =−0.44, P > 0.001), and greater social support (MOS Social Support Survey, r = 0.41, P < 0.01). Early-stage ovarian cancer survivors had few physical complaints and unmet needs, but psychologic distress was evident in a subset of survivors; the majority of survivors reported sexual dysfunction. These results indicate the need for intervention and improved distress screening in the early-stage ovarian cancer population.

abstract: Management of highly emetogenic chemotherapy

Management of highly emetogenic chemotherapy. [Curr Opin Oncol. 2012] - PubMed - NCBI

 Definition for emetogenic:

Web definitions:

Vomiting (known medically as emesis and informally as throwing up and a number of other terms) is the forceful expulsion of the contents... en.wikipedia.org/wiki/Emetogenic

                       ~~~~~~~~~~~~~~~~~~

Abstract

PURPOSE OF REVIEW:

This review updates the clinical data on antiemetic therapy for chemotherapy classified as highly emetogenic.

RECENT FINDINGS:

A meta-analysis demonstrated that palonosetron was superior to other 5-hydroxytryptamine3 (5-HT3) receptor antagonists at least in the absence of aprepitant. Two major guideline groups have reclassified all chemotherapy that contains cyclophosphamide and an anthracycline as 'highly emetogenic'. Although recommended prophylaxis for drugs in that category includes aprepitant, phase II studies with cyclophosphamide, doxorubicin, vincristine and prednisone (CHOP) and doxorubicin, bleomycin, vincristine and dacarbazine (ABVD) demonstrated that single agent palonosetron alone provided control of emesis over 85% of patients. A randomized phase III trial of olanzapine versus aprepitant found that the control of emesis was similar and nausea was significantly better controlled with olanzapine. Two studies showed that there is no impact of the moderate cytochrome P450 3A4 (CYP3A4) inhibitor aprepitant on the pharmacokinetics of cyclophosphamide. Surveys in the United States and Europe demonstrated that antiemetic prescribing practices often do not adhere to guidelines even for highly emetogenic chemotherapy.

SUMMARY:

The major guideline groups recommend a combination of a 5-HT3 receptor antagonist, dexamethasone and aprepitant ('triple therapy') for treatment categorized as highly emetogenic. Recent data suggest that, although classified as highly emetogenic, palonosetron may provide very good control of emesis for CHOP and ABVD.
Guidelines have not made firm recommendations for highly emetogenic chemotherapy administered over several days or stem cell transplant preparative regimens due to the lack of published randomized trials. Although well tolerated and effective, many patients receive suboptimal antiemetic therapy that includes aprepitant.

abstract: Critical Reviews in Oncology/Hematology - Chemotherapy-induced peripheral neurotoxicity (CIPN): An update

Critical Reviews in Oncology/Hematology - Chemotherapy-induced peripheral neurotoxicity (CIPN): An update

Abstract

The peripheral nervous system can be vulnerable to the toxic action of several drugs since it is not protected as effectively as the central nervous system from noxious exogenous agents. Drug-induced neurotoxicity can affect the nerve fibers or the neuronal bodies (generally the dorsal root ganglia of the primary sensory neurons). Among the neurotoxic drugs antineoplastic agents represent a major clinical problem, given their widespread use and the potential severity of their toxicity. In fact, the peripheral neurotoxicity of antineoplastic agents frequently represents one of their dose-limiting side effects. 

Moreover, even when antineoplastic agents’ peripheral neurotoxicity is not dose-limiting, its onset may severely affect the quality of life of cancer patients and cause chronic discomfort. 

Among the anticancer chemotherapy drugs, platinum derivates, antitubulins, thalidomide and bortezomib can induce the most severe effects on the peripheral nervous system of the treated patients. Therefore, we will review the features of chemotherapy-induced peripheral neurotoxicity (CIPN) resulting from the administration of these drugs with a focus on new classes of promising antineoplastic agents, such as epothilones and proteasome inhibitors.

abstract: [Assessment of health-related quality of life in cancer outpatients treated with chemotherapy] Japanese study

[Assessment of health-related quality of life in cancer outpatients treated with chemotherapy].


Abstract
Purpose: 
Few studies have been conducted to elucidate the health-related quality of life(HR-QOL) of cancer outpatients treated with chemotherapy. In this study, we attempted to determine the physical and psychological distress of cancer outpatients treated with chemotherapy.

Methods:
Two-hundred and ninety-six outpatients with various malignancies, including malignant lymphoma, and esophageal, gastric, pancreatic, colon, lung, breast, ovarian, uterine and skin cancers, were investigated using the Japanese version of the M. D. Anderson symptom inventory from March through June 2010 in Tokyo Medical University Hospital.

Results:
The results of the survey questionnaire indicated that 59 patients suffered from fatigue, 56 experienced numbness or tingling, 48 felt drowsy, 39 had low moods, 40 felt distressed, 38 had no appetite, 38 had dry mouth, 37 were in pain, 37 had disturbed sleep, 31 had shortness of breath, 24 had nausea, 17 suffered from vomiting, and 13 patients had memory problems. Furthermore, these symptoms interfered with work(65 patients), walking(56 patients), mood(52 patients), life enjoyment(49 patients), general activity(49 patients), and relationships with other people(42 patients). Medications prescribed for HR-QOL control were non-steroidal anti-inflammatory drugs (93 patients), morphine(32 patients), and adjuvant analgesics(47 patients).

Conclusion:
The present findings may help in the development of management strategies for physical and psychological distress, and improve HR-QOL of cancer outpatients treated with chemotherapy.

Editorial: The Relationship Between Cost and Quality, No Free Lunch - March 14, 2012 — JAMA + link to original article

The Relationship Between Cost and Quality, March 14, 2012, Joynt and Jha 307 (10): 1082 — JAMA
 Editorial: The Relationship Between Cost and Quality 

No Free Lunch

Since this article does not have an abstract, we have provided the first 150 words of the full text. (Blogger's Note: subscription required to view $$$)

"For the past 30 years, research from investigators at Dartmouth has demonstrated large and persistent variations in costs and quality across the US health care system. Beyond simply showing that cost and quality vary by geography, the Dartmouth Atlas has demonstrated that in many communities, care is so fragmented and ineffective that greater spending on Medicare beneficiaries often leads to worse outcomes^1,2 because some patients receive services that are redundant and low value and that may even have substantial risks. 

However, some US policy makers have misinterpreted the Dartmouth research and in the troves of data have found what they believe to be a free lunch: given the inverse relationship between costs and quality, it follows that it should be possible to simultaneously reduce spending and improve care. Although this notion is attractive, much of the subtlety of the Dartmouth work has been lost in translation. What ....."

[Full Text of this Article] (subscription required to view)

Related article

• Association of Hospital Spending Intensity With Mortality and Readmission Rates in Ontario Hospitals  
   JAMA. 2012;307(10):1037-1045.doi:10.1001/jama.2012.265
  • Abstract
  • Full Text
  • Full Text (PDF)
  • eSupplement
  • Author Video/Audio Interview
  • JAMA Report Video

JCO - Editorial: Caring for the Whole Patient: The Science of Psychosocial Care

open access: Editorial (special series) Caring for the Whole Patient: The Science of Psychosocial Care

"This Journal of Clinical Oncology Special Series relates to the
science of psychosocial care. This series is designed to provide oncology
professionals with the most recent information about the psychological,
psychiatric, and social aspects of cancer care. The emergence of
the field of psychosocial care reflects growing public and professional
awareness of the potential for cancer and its treatment to have profound
effects on many aspects of life. A principal goal of psychosocial
care is to recognizeandaddress the effects that cancerandits treatment
have on the mental status and emotional well-being of patients, their
family members, and their professional caregivers....."

open access: Medscape - How Would Physicians Die?

How Would Physicians Die?


"How do doctors prefer to die? This question was addressed in a recent article on the Website zocalopublicsquare.org. The article suggests that physicians eschew extraordinary measures to extend life; instead they put a priority on reducing the pain and maximizing the quality of any limited time remaining. In a discussion on Medscape Physician Connect, an all-physician discussion group, doctors evaluated the accuracy of this portrait.
Overwhelmingly, the respondents agreed with sentiments expressed in the article. They sought to avoid the agony of a lingering final illness for themselves and for those they love. The results of an accompanying poll were unanimous. When completing the thought, "If I or my family were faced with a terminal illness with great potential for a terrible course and reasonable options have failed," all 27 respondents chose, "I'd want the focus to be on quality of life and comfort, no CPR." Not one expressed a preference for life-extending measures. Several physicians shared wrenching stories from personal experience...........cont'd

Reliability, validity and feasibility of quality of life instruments for adult patients with cancer undergoing chemotherapy: result from a systematic review - 2012 - International Journal of Evidence-Based Healthcare

Abstract

Aim  The aim of this review was to analyse the literature critically and present the best available evidence related to quality of life (QoL) instruments that consists of all four subscales of physical, psychological, social and spiritual, which can be used in the clinical setting to assess adult patients with cancer on chemotherapy.

Inclusion criteria  This review included randomised control trials and observational studies without control group related to QoL instruments used for cancer chemotherapy. The types of participants for this review included all adults with cancer over the age of 18 years who have undergone chemotherapy. The QoL instruments for this review included instruments that consist of all subscales of physical, psychological, social and spiritual. In order to retrieve QoL instruments that were current and not outdated, this review included studies reported in the recent 10 years.

Results  A total of 3149 references was retrieved during the initial search. Only 13 articles with validation of the QoL instruments that contained all the four subscales of physical, psychological, social and spiritual were included in this review. Four QoL instruments were identified. These include the City of Hope QOL – Ovarian Cancer Tool (QOL-OVCA), QOL-Breast cancer version (QOL-BC) ........

Conclusion  In this review, there was one article on development of new QoL instrument, the New India QoL tool, which has comprehensive validity examinations – the least number of items that may be useful in the clinical setting but need further psychometric testing in different settings or languages. The QLI-CV instrument has had comprehensive intra- and inter-method validation on different languages, different cultural settings and various types of cancer. However, the instrument may not be feasible because the method to calculate the QoL score is not straightforward.

abstract: American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care into Standard Oncology Care

American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care into Standard Oncology Care

Abstract

Purpose 

An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer. 

Clinical Context 

Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available.

abstract: Radiation Oncology Quality: Aggressiveness of Cancer Care Near the End of Life

Radiation Oncology Quality: Aggressiveness of Cancer Care Near the End of Life


Purpose
Quality in cancer care is an issue that has come to the forefront over the past decade. Although the American Society of Clinical Oncology has developed extensive quality metrics and goals, such as limiting chemotherapy being provided within the last 14 days of a patient's life, there are no similar quality metrics, and few data, in the field of radiation oncology.


Methods
In this study, morbidity and mortality records from 2008 to 2011 were reviewed for patients at Indiana University who received radiation therapy (RT) within 30 days of death; 63 patients met those criteria.


Results
Analysis showed that 22.2% of patients had Karnofsky Performance Status Scale scores >80, whereas 66.7% of patients had scores < 60. Just over half of patients (52%) were still on treatment at death, and more than half of patients (54%) had completed less than half of their original RT plans. Six patients had their final treatments on the days of their deaths, and another 43 patients had their last treatments within 10 days of death. Forty-eight percent of patients received RT for less than one-fifth of their final month of life and 21% for more than half of their last month alive.


Conclusions
These data are valuable in ongoing discussions of RT use at the end of life, especially as related to hospice underutilization.

open access: BMC Cancer | Abstract | Monitoring physical and psychosocial symptom trajectories in ovarian cancer patients receiving chemotherapy (severe symptoms/loss of QOL/persist beyond treatments....)

Monitoring physical and psychosocial symptom trajectories in ovarian cancer patients receiving chemotherapy

The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production.

BMC Cancer 2012, 12:77 doi:10.1186/1471-2407-12-77
Published: 28 February 2012

Abstract (provisional)

Background

Diagnosis and treatment of ovarian cancer (OC) entail severe symptom burden and a significant loss of quality of life (QOL). Somatic and psychological impairments may persist well beyond active therapy. Although essential for optimal symptom management as well as for the interpretation of treatment outcomes, knowledge on the course of QOL-related issues is scarce. This study aimed at assessing the course of depressive symptoms, anxiety, fatigue and QOL in patients with OC over the course of chemotherapy until early aftercare.

Methods

23 patients were assessed longitudinally (eight time points) with regard to symptom burden (depression, anxiety, fatigue, and QOL) by means of patient-reported outcome instruments (HADS, MFI-20, EORTC QLQ-C30/ -OV28) and clinician ratings (HAMA/D) at each chemotherapy cycle and at the first two aftercare visits.

Results

Statistically significant decrease over time was found for depressive symptoms and anxiety as well as for all fatigue scales. With regard to QOL, results indicated significant increase for 11 of 15 QOL scales, best for Social (effect size = 1.95; p<0.001), Emotional (e.s. = 1.62; p<0.001) and Physical Functioning (e.s. = 1.47; p<0.001). Abdominal Symptoms (e.s. = 1.01; p=0.009) decreased, Attitudes towards Disease and Treatment (e.s. = 1.80; p<0.001) improved significantly over time. Analysis of Sexual Functioning was not possible due to a high percentage of missing responses (61.9%).

Conclusions

The present study underlines the importance of longitudinal assessment of QOL in order to facilitate the identification of symptom burden in OC patients. We found that patients show high levels of fatigue, anxiety and depressive symptoms and severely impaired QOL post-surgery (i.e. at start of chemotherapy) but their condition improves considerably throughout chemotherapy reaching nearly general population symptom levels until aftercare.(Blogger's Note: small study which may or may not apply to our general ovarian cancer women's population)

The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production.

abstract: Surveillance for hereditary cancer: Does the benefit outweigh the psychological burden?—A systematic review

Surveillance for hereditary cancer: Does the benefit outweigh the psychological burden?—A systematic review


Individuals at risk for developing hereditary cancer are offered surveillance in order to improve the prognosis. An important question is whether the benefit of surveillance outweighs the psychological burden. In this review, we evaluated all studies that investigated psychological distress and the quality of life in individuals under surveillance for hereditary cancer of the breast, ovarian, prostate, pancreas, colorectum, melanoma, and various rare syndromes such as familial adenomatous polyposis, Li–Fraumeni and Peutz–Jeghers syndrome.Thirty-two studies were identified. Surveillance for most hereditary cancers was associated with good psychological outcomes. However, surveillance of individuals at high risk for developing multiple tumors appeared to be associated with increased distress and a lower quality of life. Common factors associated with worse psychological outcomes included a personal history of cancer, female gender, having a first degree relative with cancer, negative illness perceptions and coping style. The use of a simple screening tool to identify distressed individuals is recommended.

abstract: Patients and staff perceptions of cancer patients' quality of life

Patients and staff perceptions of cancer patients' quality of life


Background
Discrepancies exist in estimation of quality of life (QL) by patients and caregivers but underlying factors are incompletely characterised.

Methods
QL of 153 patients was estimated by themselves, by 70 nurses and by 53 physicians in a cross-sectional study. Variables which could influence inter-rater agreement were evaluated.

Results
Inter-rater agreement of QL was fair (r = .292) between patients and nurses and between patients and physicians (r = .154). Inter-rater agreement with nurses was significantly lower concerning fatigue and pain for patients with a Karnofsky Index <50 when compared to patients with a KI >50. Their inter-rater agreement with physicians was significantly lower for fatigue, pain and physical functioning. Agreement on the degree of anxiety was significantly (p = .009) better for female patients. Agreement on the need for social assistance (p = .01) and physical functioning (p = .03) was significantly better for male patients. Agreement with patients on their physical functioning was significantly (p = .03) better for male nurses and male physicians (r = .944) than for female nurses and female physicians (r = .674).

Conclusions
Our study showed that estimation of overall QL of patients by professional caregivers is inaccurate. Inter-rater agreement was influenced by KI of patients, by gender of patients and caregivers and by professional experience of nurses.

open access: JNCI - Commentary Improved Outcomes in the Malnourished Patient: We’re Not There Yet

".......By outlining the limitations, the authors provide direction for future researchers. A key point made by the authors is that despite the statistical significance of some aspects of QOL, it is unclear how meaningful these changes are to the patient. The challenge that researchers face is explaining how improved emotional well-being resulted from taking an oral nutritional supplement and/or receiving dietary counseling. Was the improvement from the nutritional counseling, the supplement, the combination, or the extra attention to and clinical involvement with the patient....."

"....Nutritional supplements may indeed improve outcomes for some patients experiencing malnutrition but not cachexia. Dietary counseling may be beneficial for patients at high risk for malnutrition and their caregivers. However, the research conducted to date is fraught with limitations; hence, it is challenging for clinicians to apply these results to everyday practice."

Medscape: Uncertainty About Nutrition in Cancer Patients

abstract: Cognitive function and quality of life in ovarian cancer- Gynecologic Oncology (chemobrain)

Objectives

As advances in treatment have prolonged survival for many patients with ovarian cancer, there has been growing interest in assessing the adverse effects of disease and treatment. The aim of this study was to review the literature on cognitive function and quality of life (QOL) in this population.

Results

The small number of studies including formal evaluations of neurocognitive function suggests that many ovarian cancer patients experience cognitive difficulties associated with their disease and treatment. Several studies described declines in self-reported cognitive function that may impact QOL, but the results were not consistent across studies.

---

Highlights

► The literature suggests that many patients with ovarian cancer experience cognitive difficulties associated with their disease and treatment.
► Several studies reported declines in self-reported cognitive function that may impact QOL, but the results were inconsistent across studies.

abstract: Quality of life of parents diagnosed with cancer: change over time and influencing factors.

"Suffering from cancer while having parental responsibilities can amplify the psychosocial strain that the disease puts on the individual as well as on the whole family system.
Our longitudinal study examines changes in the quality of life of cancer patients in relation to parenthood. The quality of life of cancer patients is assessed with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire 30-item version during the initial treatment period (T1) and compared to the quality of life 2 years later (T2). Two groups of patients are compared: those who have children below the age of 18 years (n= 41) and those who do not have children (n= 28). Shortly after being diagnosed with cancer (T1), both groups report a similarly low quality of life. Two years later (T2), individuals with children below the age of 18 report better quality of life on the majority of the dimensions assessed. However, variance analysis did not show that this is an independent effect of parenthood. In fact, having a partner and being female proved to impact the quality of life. These findings support the existing body of research on the influence of social support and gender on quality of life. The resulting limitations and suggestions on how to overcome them in further research are discussed."