Living with a high-grade glioma: A qualitative study of patients' experiences and care needs.

PURPOSE: Patients with high-grade glioma (HGG) face debilitating symptoms and a poor prognosis. The aims of this study were to better understand how patients with HGG experience life with a brain tumor, and to explore their professional care needs. METHODS: We conducted a qualitative research of HGG patients' experiences using semi-structured interviews and using a Grounded Theory approach. Participants were recruited during patients' hospital visits for treatment or follow-up at the University Hospitals Leuven, Belgium. Seventeen HGG patients were interviewed for the study. RESULTS: Interviews showed that HGG diagnosis left patients feeling like everything was surreal. From that point on, their life was marked by loss. HGG patients sometimes felt disregarded by family caregivers, professional caregivers, and the health care system. They felt as if they were on the "sidelines" of their own life. Despite the devastating experience of living with this type of brain tumor, HGG patients also expressed great inner strength, and they tried to maintain hope. Their pivotal professional care needs concerned information, communication, and accessibility. CONCLUSIONS: Diagnosis of HGG changes life drastically. Our results highlight the need for professional caregivers to be more considerate and supportive of patients with this life-changing diagnosis. Additionally, professional caregivers need to acknowledge these patients as persons and strive to empower them in order to bolster their personal strength.

Family Caregivers of Patients With a High-Grade Glioma: A Qualitative Study of Their Lived Experience and Needs Related to Professional Care.

BACKGROUND: The poor prognosis and disabling symptoms of a high-grade glioma (HGG) affect not only the patient but place high demands on family caregivers. OBJECTIVE: The objective of this study was to explore the experience of family caregivers of patients with HGG and their needs related to professional care. METHODS: A qualitative research using semistructured interviews was conducted. Sixteen family caregivers of patients with an HGG who were treated or in follow-up at a Belgian hospital were interviewed. RESULTS: Family caregivers reported experiencing loss of their old life and the patient's old self. They were saddened to see the patient's disabilities and the change in their relationship, which in turn contributed to feelings of loneliness. At the same time, they reported a strong commitment and determination to provide the patient with the best possible care. Many, however, felt unprepared to do so, and they reported feeling insecure. Caregivers expressed the need for information and for consideration and support. CONCLUSIONS: The diagnosis of an HGG is disruptive to the life of family caregivers. They strongly commit but at the same time struggle to care for the patient. IMPLICATIONS FOR PRACTICE: Professional caregivers should be aware of the subtle balance between family caregivers' wish to care and the burden of caregiving. Professional caregivers can be of great value to family caregivers by providing guidance and assistance for this new caregiving role while being considerate of their commitment and their grief.

Detection of delirium in palliative care unit patients: a prospective descriptive study of the Delirium Observation Screening Scale administered by bedside nurses.

BACKGROUND: The Delirium Observation Screening Scale (DOS) is designed to detect delirium by nurses' observations and has shown good psychometric properties. Its use in palliative care unit patients has not been studied. AIM: To determine diagnostic and concurrent validity, internal consistency, and user-friendliness of the Delirium Observation Screening Scale administered by bedside nurses in palliative care unit patients. DESIGN: In this descriptive study, psychometric properties of the Delirium Observation Screening Scale were tested by comparing the performance on the Delirium Observation Screening Scale (bedside nurses) to the algorithm of the Confusion Assessment Method and the Delirium Index (DI) (researchers). Paired observations were collected on three time points. Afterward, the user-friendliness of the Delirium Observation Screening Scale was determined by bedside nurses using a questionnaire. SETTING/PARTICIPANTS: In total, 48 patients were recruited from one palliative care unit (PCU) of a university hospital. Of the 14 eligible bedside nurses of the palliative care unit, 10 participated in the study. RESULTS: Delirium was present in 22.9% of patients. Diagnostic validity of the Delirium Observation Screening Scale was very good (area under the curve = 0.933), with 81.8% sensitivity, 96.1% specificity, 69.2% positive, and 98% negative predictive value. Concurrent validity of the Delirium Observation Screening Scale with the Delirium Index was moderate (rSpearman = 0.53, p = 0.001). The Cronbach's alpha for all Delirium Observation Screening Scale shift scores was 0.772. Generally, bedside nurses experienced the Delirium Observation Screening Scale as user-friendly. However, most Delirium Observation Screening Scale items (n = 11/13 items) need verbally active patients to perform the observations correctly. CONCLUSION: The Delirium Observation Screening Scale can be used for delirium screening in verbally active palliative care unit patients. The scale was rated as easy to use and relevant. Further validation studies in this population are required.

The impact of a high-grade glioma on everyday life: a systematic review from the patient's and caregiver's perspective.

BACKGROUND: With poor prognosis and disabling symptomatology high-grade gliomas affect not only the patient but also the family. PURPOSE: The aim of this systematic review is to explore the experiences and needs of patients with a high-grade glioma and their family caregivers. METHOD: Based on literature search in six databases, sixteen qualitative studies, published between 2000 and 2010 and with mixed methodological quality, were included. RESULTS: For both patients and their caregivers the diagnosis is marked by shock and recognition of death. For patients, coping with restriction seems to be most difficult to deal with. Especially loss of autonomy is hard. For caregivers, neurocognitive symptoms and personality changes irreversibly change the relationship with the patient leading to caregivers expressing a sense of total responsibility. The experience of being a caregiver is described by positive as well as negative feelings. Both patients and caregivers describe the need for hope, support and information. CONCLUSION: The review provides some relevant insight in the experiences and needs of patients with a high-grade glioma and their caregivers. The methodological limitations of the included studies, however, urge for more research to refine our understanding of patients' and caregivers' experiences and needs to better tune care to their needs.

Surveillance behavior and prophylactic surgery after predictive testing for hereditary breast/ovarian cancer.

This article describes breast or ovarian cancer surveillance practices and prophylactic surgery involving 34 carriers and 34 noncarriers of a BRCA1/2 mutation within the year after predictive testing. It also evaluates the effect of the predictive test result on cancer screening practices and provides insight into factors important in the decision-making process about health-related behavior. Within the year following predictive testing, 9% (3 of 34) of the carriers decided to have a prophylactic mastectomy. The majority of the carriers was adherent to recommendations regarding regular cancer surveillance following predictive testing. Furthermore, carriers' adherence to clinical breast examination and mammography recommendations significantly increased from pre- to posttest and was significantly higher than noncarriers' utilization after testing. Of the carriers eligible for prophylactic salpingo-oophorectomy, 75% had this operation. All carriers who were advised to have regular surveillance of the ovaries had ovarian ultrasounds. The authors gave major attention to factors playing a part in the decision-making process about health-related behavior.

Diagnostic genetic testing for hereditary breast and ovarian cancer in cancer patients: women's looking back on the pre-test period and a psychological evaluation.

The aim of this retrospective, exploratory study was to gain insight into how cancer patients who had a diagnostic genetic test for hereditary breast and/or ovarian cancer looked back on the pre-test period and to gain insight into the psychological impact of the genetic test result. Data were collected by semistructured interviews and self-report questionnaires in 19 BRCA1 or BRCA2 mutation carriers, 7 noncarriers, and 36 patients with an inconclusive genetic test result. Cancer patients had a genetic test mainly for other persons, especially relatives in the descendant line. Mutation carriers felt more in control, but they also reported negative effects of genetic testing such as negative emotional impact and being concerned about their children. Non-carriers were relieved. The group of women where no BRCA1 or BRCA2 mutation was found in the family was heterogeneous. Some misinterpreted the genetic test result as revealing the absence of a genetic predisposition. Others were relieved but also still aware of an increased risk, whereas a last group experienced continuing uncertainty and felt less in control. Self-report questionnaires did not reveal differences in general and cancer-specific distress as a function of the genetic test result. Furthermore, no differences among the three groups were found regarding perceived seriousness of breast and ovarian cancer and perceived control of breast cancer. Perceived control of ovarian cancer was highest in the inconclusive group.

Risk communication strategies: state of the art and effectiveness in the context of cancer genetic services.

The objective of this paper is first to describe the different strategies used to communicate risks to patients in the field of cancer or genetics, to review their effectiveness, and to summarise the state of the art of this practice in particular, in cancer genetics. The target audience is health care professionals involved in the communication of cancer risks, and genetic risks of breast/ovarian or colorectal cancer in particular. The methods include a review of the literature (Medline, Pascal, PsycInfo, Embase) by a panel of researchers and clinicians (cancer geneticists, epidemiologists, health psychologists, sociologists) in the context of a European Project on risk communication. We highlight practices that have been shown to be effective in the context of health psychology research and those being still under consideration for use in routine practice. In conclusion, this paper adds clinical relevance to the research evidence. We propose specific steps that could be integrated in standard clinical practice based on current evidence for their usefulness/effectiveness.

Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients.

The psychological aspects of genetic testing for hereditary breast and ovarian cancer (HBOC) in cancer patients (diagnostic genetic testing) have so far received less attention than predictive genetic testing in unaffected persons. Our study is aimed at gaining insight into the psychological aspects of diagnostic genetic testing and at formulating practical recommendations for counseling. Cancer patients often play a key role in the communication of information to relatives because they were the first individuals to be tested in the family. The present article focuses on the communication to close and distant relatives about the hereditary cancer, the genetic test and its result. Participants previously diagnosed with breast and/or ovarian cancer, with a family history of these cancers and who requested DNA-testing, were eligible for the study. Of the 83 eligible patients who could be contacted, 63 participated (response rate = 76%). Twenty-six participants were members of a family where a BRCA1 or BRCA2 mutation was detected. The DNA-analysis in the family of 37 participants had not revealed any mutation. Data were collected by semi-structured interviews and psychological tests and questionnaires. The dissemination of information was largely focused on first-degree relatives. Communication to distant relatives about the genetic test and its result was problematic. Other than the genetic test result and age as "objective" predictors of informing distant relatives, little and/or superficial contact seemed to be the major subjective barrier to informing distant relatives. Furthermore, the knowledge about HBOC of these messengers reveals several shortcomings. Communication within the family should receive special attention during counseling.