An oncology volunteer support organization: The benefits and fit within the health care system

Psychosocial support programs and organizations provide a range of resources to cancer patients and their families. In spite of well-documented research attesting to their positive impact, such organizations are often not well integrated into the medical system. This paper examines the benefits to patients and families of using Hope and Cope, a voluntary support system. Also, it explores the ways in which these benefits may relate to the health care team. A total of 121 patient users and non-users of Hope and Cope and 50 family members were surveyed about their specific needs and how they were met. The users and non-users assessed their needs for information and emotional support differently: those with greater needs utilized the resources and were satisfied with the outcomes, while those with fewer needs did not. The need for emotional support significantly discriminated users of Hope and Cope from non-users. Participants saw the program as helping them manage side effects, handle medical treatment, and know which questions to ask their physicians. This study concludes that patients appear to choose wisely according to their needs and that organizations such as Hope and Cope help. However, questions are raised about the relationship between the health care team and voluntary support programs. How and when information about resources is conveyed to patients continues to be problematic. Responses to these concerns may lead to strategies to increased collaboration between oncology volunteer support services and the health care team.     

Patient care in multidisciplinary cancer clinics: Does attention to psychosocial needs predict patient satisfaction?

Satisfaction with treatment is an important early indicator of medical outcome for cancer patients. This study examined patient satisfaction with treatment-planning and follow-up appointments among 58 recently diagnosed ENT and GI cancer patients seen at a multidisciplinary cancer clinic. Patients reported which medical specialties they saw, whether adjuvant treatment was planned, and whether they had a chance to discuss their feelings about the diagnosis. Patients also rated the attention paid by staff to several psychosocial issues considered relevant to cancer. These included how the patient was coping, support services available, and the issue of common emotional reactions to cancer. Patients then rated their overall satisfaction with their clinic visits. Overall satisfaction was predicted by younger age, female gender, and greater attention to how patients were coping with their illness. Having a chance to discuss one's feelings about the diagnosis, and staff attention to other psychosocial issues, also predicted patient satisfaction. The relationship of these psychosocial issues to patient satisfaction did not vary by gender. Results suggest that patient satisfaction may be enhanced when hospital staff attend to and provide for the psychosocial needs engendered by a diagnosis of cancer.     

Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life.

PURPOSE: This study examined a novel intervention, dignity therapy, designed to address psychosocial and existential distress among terminally ill patients. Dignity therapy invites patients to discuss issues that matter most or that they would most want remembered. Sessions are transcribed and edited, with a returned final version that they can bequeath to a friend or family member. The objective of this study was to establish the feasibility of dignity therapy and determine its impact on various measures of psychosocial and existential distress. PATIENTS AND METHODS: Terminally ill inpatients and those receiving home-based palliative care services in Winnipeg, Canada, and Perth, Australia, were asked to complete pre- and post-intervention measures of sense of dignity, depression, suffering, and hopelessness; sense of purpose, sense of meaning, desire for death, will to live, and suicidality; and a post-intervention satisfaction survey. RESULTS: Ninety-one percent of participants reported being satisfied with dignity therapy; 76% reported a heightened sense of dignity; 68% reported an increased sense of purpose; 67% reported a heightened sense of meaning; 47% reported an increased will to live; and 81% reported that it had been or would be of help to their family. Post-intervention measures of suffering showed significant improvement (P = .023) and reduced depressive symptoms (P = .05). Finding dignity therapy helpful to their family correlated with life feeling more meaningful (r = 0.480; P = .000) and having a sense of purpose (r = 0.562; P = .000), accompanied by a lessened sense of suffering (r = 0.327; P = .001) and increased will to live (r = 0.387; P = .000). CONCLUSION: Dignity therapy shows promise as a novel therapeutic intervention for suffering and distress at the end of life.     

Practice and problem in hospice and home palliative care

In Yamaguchi Red Cross Hospital, hospice services are provided under coordination of palliative care for outpatients and for inpatients and home palliative care. The Home Nursing Center plays the central roles in home palliative care and needs to exclusively provide home medical services. We served for 25% of the patients who died of terminal cancer in the palliative care unit or at home in Yamaguchi City. In the future hospice and palliative home care services, the system to allow patients to choose in-hospital care/outpatient care/home palliative care should be established. Home palliative care should be disseminated under the coordination of local municipalities, medical institutions and welfare service organizations so that patients and families can live meaningful lives at their home where they long lived as the place they chose to live.     

Interest in services among prostate cancer patients receiving androgen deprivation therapy

Treatment side effects and decreased quality of life associated with androgen deprivation therapy (ADT) suggest the need for supportive services for prostate cancer (PC) patients receiving ADT. Nonetheless, uptake of services is low, suggesting that PC patients' preferences are not being addressed. We examined interest in supportive services and predictors of interest among 118 PC patients receiving ADT. Overall interest in services was associated with lower quality of life (p = 0.01). The majority of participants expressed interest in informational services (70%), with a minority (22%) expressing interest in psychosocial services. Interest in psychosocial services was associated with younger age (p = 0.02), and shorter duration of ADT (p < 0.04), but was unrelated to psychological distress or social support. Although most men (68%) reported that they would prefer not to take medication for depression, 75% would do so if advised by their physician. Overall, results suggest that PC patients on ADT prefer individualized informational support. Substantial interest (61%) in Oncolink, an internet-based informational resource, suggests the Internet may provide an acceptable mode of service delivery. Health care providers should consider integrating increased informational support into routine care and, more generally, consider patient preferences in prioritizing and designing support services.     

Breast cancer and problems with medical interactions: relationships with traumatic stress, emotional self-efficacy, and social support

This investigation examined relationships between breast cancer patients' psychosocial characteristics (impact of the illness, traumatic stress symptoms, emotional self-efficacy, and social support) and problems they perceived in their medical interactions and their satisfaction with their physicians. Participants were 352 women enrolled in a multicenter trial of the effects of group therapy for women with recently diagnosed primary breast cancer. The findings reported here are from a cross-sectional analysis of baseline data gathered prior to randomization. Problems interacting with physicians and nurses were associated with greater levels of cancer-related traumatic stress (p < 0.01), less emotional self-efficacy for cancer (p < 0.05), less satisfaction with informational support from family, friends, and spouse, and a tendency to perceive those sources of support as more aversive (p < 0.05). Women who were less satisfied with emotional support from their family, friends and spouse were less likely to feel satisfied with their physicians (p < 0.05). These patient characteristics identify women with primary breast cancer who are likely to experience difficulty in their interactions with nurses and physicians and to be less satisfied with their physicians.     

The role of community-based and philanthropic organizations in meeting cancer patient and caregiver needs

We examined information from community-based and philanthropic organizations to document the cancer-related services that are currently available, establish which services are still needed, and determine who utilizes these formal support networks. In Phase I, 32 of 41 eligible organizations participated in a survey conducted from December 1999 to March 2000. The most common mission focus among participating organizations was information/referral-centered. The most common services provided were referrals to information resources and provision of cancer-related information. Only two of the organizations in Phase I provided client demographic information and both indicated that client populations were predominantly white, female, and over age 40. Phase II of the study involved analyzing patient data from Cancer Care, Inc., a national service organizations for cancer patients. Between 1983 and 1997, there were 2,714 prostate cancer patients and 9,451 breast cancer patients included in the Cancer Care database. Their most commonly reported problems were related to personal adjustment to illness, financial, home care, and transportation needs. There were significant differences in problems reported depending upon age and disease status. In addition, the results of this study support the idea that those at highest risk for developing and dying of cancer are the least likely to utilize formal support networks. Further, a gap in service provision for assistance with practical needs (e.g., transportation, home care, child care, psychosocial support) was identified. Due to the increasing use of outpatient care for cancer patients, a greater demand for practical assistance can be expected in the future. The availability of practical services will need to be increased in order to effectively meet cancer patient needs.     

Genetic counseling and clinical cancer genetics services

Cancer genetic services, typically provided by clinicians with expertise in both oncology and genetics, include cancer risk assessment and education, facilitation of genetic testing, pre-and post-test counseling, provision of personally tailored cancer risk management options and recommendations, and psychosocial counseling and support services. All oncology providers should obtain basic information on the family cancer history of their patients to determine the likelihood of hereditary cancer risk as well as possible indications for providing brief or comprehensive cancer genetic counseling. Those who choose to provide these services themselves must be familiar with the complex issues of genetic counseling and testing, and be aware of the time and expertise required to adequately deliver these services. Genetic nurses and genetic counselors with master's degrees function as valuable members of a comprehensive cancer genetic service; they are trained to independently collect and confirm medical and family history information, perform risk assessments, offer patient education regarding cancer and genetics, and provide supportive counseling services for patients and families. It is hoped that specific risk interventions will significantly reduce morbidity and mortality from familial forms of cancer. This review outlines the process of cancer genetic counseling and defines the roles of the cancer genetic counselor and the function of the cancer genetics specialty clinic. The possible medical and legal implications for failing to obtain adequate family history information are reviewed, and the issues of genetic discrimination are discussed.     

Psychosocial oncology: supportive care for the cancer patient

Increasing attention is being paid to the emotional and psychosocial needs of cancer patients. As a result of huge advances in early detection and in treatment modalities, there now are millions of cancer survivors in the United States. There has been a realization that cancer survivors have distinct psychosocial needs. As cancer survivors live longer, reduction of psychological distress has been recognized as being an important part of having an improved quality of life. There have been numerous changes in the field of psychosocial oncology since it first began 25 years ago. Guidelines now exist for the definition of distress and decision trees are available for making the appropriate referrals. Advances in pharmacologic treatment for depression and anxiety have made it possible to decrease distress and increase coping in cancer patients undergoing treatment as well as in cancer survivors. Numerous individual and group therapies have demonstrated effectiveness in improving mood and quality of life in cancer patients and those at high risk for developing cancer. Due to the forthright efforts of cancer patients, there are now many organizations and list serves (e-mailing lists) that cancer survivors can turn to for help before, during, and after cancer treatment. Finally, with the rapid expansion of the internet not only are there websites available as resources, but also the creation of interactive online support is becoming a reality. One of the most important issues in providing supportive care to cancer patients in the future is to meet the individual needs of patients and provide the type of psychological therapy that will work best for them.     

Pharmacist's role in meeting the psychosocial needs of cancer patients using complementary therapy

Complementary therapy is commonly used amongst cancer patients. The motivation for cancer patients to use complementary therapy is complex. Pharmacists at the British Columbia Cancer Agency are often called on to advise patients on the use of herbs and dietary supplements. However, they do not routinely address the psychosocial needs that motivate the patients to use these products. The most common factors involved are increased anxiety, need for information, maintenance of hope, a sense of control, negative experience with conventional medicine, and perceived holistic nature of complementary therapy. Pharmacists are in a position to identify and address some of the psychosocial issues, either directly or through referral to appropriate psychosocial counsellors. This includes screening for patients with significant anxiety, helping search for accurate information on conventional and complementary treatments, and maintaining a sense of hope and self control. The opportunity to provide basic psychosocial training to pharmacists should be explored, so that they may systematically assess and address the more common, simple psychosocial issues in cancer patients who seek to use complementary therapy. Given the propensity of distress in cancer patients, in general, this may provide potential benefits for patients seeking conventional and complementary therapies.     

Exploring the Impact of Prostate Cancer on Men's Sexual Well-Being

The goal of this research was to better understand the impact of prostate cancer and its treatment on a broad range of aspects of men's sexual well-being. Interviews were conducted with 19 men. The men ranged in age from 49 to 74 years and were 1 to 5 years posttreatment. Our results suggest that some but not all aspects of men's sexual well-being are affected by treatment for prostate cancer. Further, the specific aspects that were affected as well as their emotional impact varied considerably from individual to individual. Most of the men reported that, prior to diagnosis and treatment, they engaged in regular sexual activity and that they had been satisfied or very satisfied with their sexual relationship. Following treatment, most (but not all) of the men reported no change in the amount and type of affection expressed, the quality of their romantic relationship, their self-concept as a man, or their sexual desire. In contrast, nearly all of the men described negative changes that were distressing to them in erections, orgasmic consistency, and sexual satisfaction. Further, most of the men believed that their sex life was over due to their erectile difficulties and so had stopped engaging in any sexual activity with their partner, although one third of them continued to masturbate. Five themes emerged with respect to factors that either contributed to or buffered the emotional impact of these changes: partner responses to changes in sexual functioning, effectiveness of medical treatments, communication with their partner about sexual functioning, acceptance of or resignation to sexual changes, and communication with physicians about sexual functioning. Finally, most participants felt that the health care system did not respond adequately to their needs. These results are discussed with respect to the importance of facilitating sexual communication between partners and between patients and health care providers.     

Use of complementary therapies during chemotherapy: influence of patients' satisfaction with treatment decision making and the treating oncologist

The relationship between the use of complementary therapy (CT) and satisfaction with medical treatment decision making and with the treating oncologist was evaluated in a sample of 166 women who were undergoing an initial course of chemotherapy for early-stage breast cancer. At the beginning of chemotherapy, 39% indicated already trying CT and an additional 13% reported planning to try CT. These women mentioned a variety of vitamin, nutritional, herbal, physical, mental, and spiritual approaches. Four months later, when most patients had completed chemotherapy, more than half (53%) reported using CT, with another 8% planning to try it. Regression analysis controlling for psychosocial and medical variables revealed that women who were younger and less satisfied with their treatment decision-making experience were significantly more likely to use CT. When predicting use of CT at the conclusion of treatment, baseline utilization was the greatest predictor, but dissatisfaction with the oncologist was also a significant predictor. These findings suggest that patients who are dissatisfied with their medical care may be more likely to use CT during treatment. Further research is needed to elucidate the relationship between satisfaction with medical decision making and the patient-physician relationship to CT use among cancer patients. The findings also highlight the importance of good patient-physician communication about CT use throughout the cancer treatment experience.     

Resource use in women completing treatment for breast cancer

OBJECTIVE: To explore resources used by women completing treatment for breast cancer, how they learned about them, and the psychological factors that predicted their use. DESIGN: A questionnaire on resource use was administered as part of a randomized clinical trial which assessed subjects' psychosocial characteristics and tested the outcomes of a psychosocial intervention. SETTING: Women completing treatment for breast cancer were recruited from the oncology departments of three university-teaching hospitals in Montreal. A questionnaire gathered data on the resources used by the subjects, how they learned about them, and the role of the health care team in their decision-making. Emotional distress, dimensions of coping effort, a sense of control and optimism were also measured. RESULTS: Five categories of resources were explored; professional services, informal support networks, informational resources, support organizations and complementary therapies. Most women found out about the last two resources by themselves. Women who used cancer support organizations or complementary therapies scored high on the use of problem-solving coping and low on the use of escape/avoidance coping. In addition they were moderately optimistic, had a slightly lower sense of personal control and were somewhat more distressed than the non-users. The use of support organizations and complementary therapies appears to represent a thoughtful approach to dealing with the distress of cancer. The opinion of the oncologist regarding resource use was valued by nearly half of the sample.     

Follow-up care of breast cancer survivors

Breast cancer survivors may have several medical and psychosocial concerns in follow-up care. Women with a history of breast cancer should be followed for local-regional recurrence or metastatic disease, as well as for the development of a second primary breast cancer in the contralateral breast. Regular follow-up visits can foster an ongoing patient-clinician relationship both to ensure adequate surveillance and so that symptoms of recurrence or complications of therapy will be reported by the patient and addressed promptly. There are multiple possible long-term complications that may arise following breast cancer treatment, many of which may be ameliorated with various therapies. Clinicians can also provide guidance and counseling as well as psychosocial support to patients regarding medical and psychosocial decisions that may be affected by their personal history of breast cancer.     

Identifying the needs of brain tumor patients and their caregivers

The purpose of this study is to identify the needs of brain tumor patients and their caregivers to provide improved health services to these populations. Two different questionnaires were designed for patients and caregivers. Both questionnaires contained questions pertaining to three realms: disease symptoms/treatment, health care provider, daily living/finances. The caregivers' questionnaires contained an additional domain on emotional needs. Each question was evaluated for the degree of importance and satisfaction. Exploratory analyses determined whether baseline characteristics affect responder importance or satisfaction. Also, areas of high agreement/disagreement in satisfaction between the participating patient-caregiver pairs were identified. Questions for which?>50% of the patients and caregivers thought were "very important" but?>30% were dissatisfied include: understanding the cause of brain tumors, dealing with patients' lower energy, identifying healthful foods and activities for patients, telephone access to health care providers, information on medical insurance coverage, and support from their employer. In the emotional realm, caregivers identified 9 out of 10 items as important but need further improvement. Areas of high disagreement in satisfaction between participating patient-caregiver pairs include: getting help with household chores (P value?=?0.006) and finding time for personal needs (P value?相似文献   

Psychological distress in cancer patients assessed with an expert rating scale

The purpose of this study was to investigate psychosocial stress in a large sample of cancer patients using an expert rating scale. Specific aims were to analyse the relevance of setting variables (type of clinic, contact initiative, therapy) and gender. A total of 6365 patients were assessed in 105 institutions. Univariate and multivariate statistical analysis of setting variables indicated that patients treated in palliative care settings showed highest distress scores compared to patients recruited from hospitals and outpatient clinics (P<0.001). Significant differences were also found for contact initiative (P<0.001); lowest distress was found in patients who were recruited by routine contact. Patients who asked for psychosocial support or who were recruited by the medical staff showed the highest distress scores. The analysis of therapy groups showed that patients receiving radiotherapy or surgery were not more distressed than patients without therapy. The most distressing treatment was chemotherapy. Gender had differential effects on clinic type (P<0.001) and contact initiative (P<0.001) but not on treatment and diagnosis. Expert rating scales are an important complement for self-assessment questionnaires to evaluate psychological distress of cancer patients in psychosocial studies as well as in routine medical care.     

Exploring Oncologists' Beliefs About Psychosocial Groups

The authors investigated the beliefs of medical and radiation oncologists regarding psychosocial groups and their willingness to initiate referrals routinely to such groups. Sixteen of the 20 oncologists responsible for adult care in a geographically defined population of 1 million participated. The survey instrument queried the oncologists regarding the harm or benefit they expected from psychosocial groups and their views about appropriate intervention targets and timing. Although harm to patients was not a major concern, the respondents did not anticipate much benefit either. Benefits were expected during cancer treatment and after existing therapies failed. More than half the oncologists selected depression, anxiety, anger, and compliance with medical treatment as appropriate focuses for psychosocial groups. The authors found that the oncologists were only minimally concerned about the possibility that psychosocial programs would interfere with their treatments. They discuss implications for patient care such as responding to unmet needs and closing service gaps through increased communication as well as directions for research such as the merits of an oncologists' randomization design.     

Perception of Patients with Cancer towards Support Management Services and Use of Complementary Alternative Medicine - a Single Institution Hospital-Based Study in Saudi Arabia

Background: To evaluate the perception of cancer patients toward treatment services and influencingfactors and to inquire about the use of complementary alternative medicine (CAM). Materials and Methods:Information was obtained through pre-tested structured questionnaires completed by cancer patients duringtreatment at King Abdulaziz University Hospital, Jeddah, Saudi Arabia. Results: Of 242 patients, 137 (64.6%)accepted to enter this study. Most were Saudi (n=93, 68%), female (n= 80, 58%), educated at university (n=71,52%), married (n=97, 72%) and with breast cancer (n=36, 26%). One-hundred (73%) patients were satisfiedwith the services provided; 61% were Saudi. Ninety-four (68%) respondents were satisfied with the explanationof their cancer. Twenty-eight (21.6%) patients received CAM, of them 54.0% received herbal followed by rakia(21.0%), nutritional supplements/vitamins (7.0%) and Zamam water (18.0%), with significant differences amongthem (p =0.004). Seven (5%) patients believed this therapy could be used alone; 34 (25%) patients believed itcould be used with other treatments, regardless of whether they themselves used this therapy. Fifty-three (53%)satisfied patients felt they received enough support; 31 (58%) patients received support from family and friends;22 (41.6%) patients received support from the health-care team. Patients who received information about theirdisease from their physicians and those who felt they had enough support were more satisfied. The patientswho took alternative treatment were older age, mostly female and highly educated but values did not reachsignificance. Conclusions: We stress enhancing the educational and supportive aspects of cancer-patient servicesto improve their treatment satisfaction and emphasize the need for increasing the educational and awarenessprograms offered to these patients.