Biomedical subjects

J L Holley

Publications and source records attributed to J L Holley.

At least 19 recordsLinked to original sources

PubMed2001

Attitudes of patients toward cardiopulmonary resuscitation in the dialysis unit.

Some dialysis units have a policy of performing cardiopulmonary resuscitation (CPR) on all patients who experience cardiac arrest while undergoing dialysis. However, to perform CPR on patients who do not want it is contrary to ethics and the law. We interviewed hemodialysis patients in 12 units in Missouri, New York, and West Virginia to learn their attitudes about CPR. Four hundred sixty-nine of 830 patients (57%) agreed to be interviewed. Eighty-seven percent of patients wanted to undergo CPR if cardiac arrest were to occur while undergoing dialysis. Patients who had seen CPR on television were more likely to report that they knew what CPR was (94% versus 68%; P < 0.001) and to want CPR (88% versus 78%; P = 0.033). Thirteen percent of patients did not want CPR if cardiac arrest were to occur while undergoing dialysis. Compared with patients who wanted CPR, those who did not were older (69 versus 59 years; P = 0.026), had more comorbid conditions (2.0 versus 1.5 comorbid conditions; P = 0.016), and were more likely to have a living will (61% versus 43%; P = 0.01), be widowed (36% versus 20%; P = 0.026), and live in a nursing home (9% versus 3%; P = 0.017). Blacks were significantly more likely to want CPR than whites (adjusted odds ratio, 6.56; 95% confidence interval, 2.57 to 22.27). Only 20 of 58 patients (35%) who did not want CPR were certain they had a do-not-resuscitate order in their dialysis chart. Ninety-two percent of patients who wanted CPR agreed that patients who did not want CPR should have their wishes respected by the dialysis unit. We conclude that most dialysis patients want to undergo CPR, but also want other patients' preferences not to be resuscitated to be respected. Dialysis units need to do a better job of identifying patients who prefer not to be resuscitated and respecting their wishes in the event of cardiac arrest while undergoing dialysis. Most importantly, nephrologists and dialysis unit staff need to educate dialysis patients about the poor outcomes with CPR so that dialysis patients' decisions about CPR are informed.

Aged↗

PubMed2001

Improving advance care planning by accommodating family preferences.

CONTEXT: Family members often lack the knowledge of patients' values and preferences needed to function well as surrogate decision-makers. OBJECTIVE: To determine whether differences in values and preferences for the advance care planning process may be reasons family members are inadequately informed to act as surrogates. DESIGN: Face-to-face and telephone surveys using structured questionnaires. PARTICIPANTS: Two hundred forty-two pairs of dialysis patients and their designated surrogates. MAIN OUTCOME MEASURES: Content and number of end-of-life care discussions; patient and surrogate attitudes toward having patients express preferences explicitly; factors most important to surrogates in decision making; and within-pair agreement about the values of suffering and certainty. RESULTS: Ninety percent of patients designated a family member as their surrogate. In most cases, having more conversations about end-of-life issues did not increase surrogate knowledge of patients' values or preferences. Surrogates wanted written and oral instructions more often than patients wanted to provide them (62% vs. 39%, p < 0.001). Knowing the patient's wish to stop treatment in the present condition was more important to most surrogates than the physician's recommendation to stop treatment (62% vs. 45%, p < 0.001). Compared to patients, surrogates were less likely to want to prolong the patient's life if it entailed suffering (12% vs. 23%, p < 0.01) and were more concerned about being certain before stopping life-sustaining treatments (85% vs. 77%, p < 0.02). CONCLUSIONS: Differences in preferences for the advance care planning process between patients and their surrogates and failure to discuss specific end-of-life values and preferences may explain why surrogates often lack information needed to serve as surrogate decision-makers.

Adolescent↗

PubMed2000

Cloning, expression and evaluation of a recombinant sub-unit vaccine against Clostridium botulinum type F toxin.

A synthetic gene encoding the Hc (binding) domain of Clostridium botulinum neurotoxin F (FHc) was expressed in Escherichia coli fused to maltose binding protein (MBP). The purified MBP-FHc and FHc isolated after removal of MBP were evaluated in mice for their ability to protect against toxin challenge. Balb/c mice developed a protective immune response following administration of either protein via the intraperitoneal or intramuscular routes. A comparison of antibody titres and protection following single and multiple vaccinations and the effects of dosage are shown. The long term protection afforded by the vaccines was also investigated. Ten months following vaccination mice were still protected when challenged with 10(4) MLD(50) doses of botulinum toxin F.

ATP-Binding Cassette Transporters↗

PubMed2000

An analysis of the increased demands placed on dialysis health care team members by functionally dependent hemodialysis patients.

A team of health care providers is integral to the care of chronic hemodialysis patients and includes nephrologists, social workers, dietitians, and nurses. Increasingly, the chronic hemodialysis population is composed of older patients with multiple comorbid conditions and reduced functional independence. The demands placed on social workers, nurses, and dietitians caring for the increasingly fragile chronic hemodialysis population have not been examined. We compared the interventions required by social workers, dietitians, and nurses caring for two demographically matched chronic hemodialysis patient groups undergoing dialysis in two outpatient units over a 6-month period to examine the demands imposed by these functionally dependent patients. Patients underwent dialysis in either a step-down unit or an ambulatory unit. Patients undergoing dialysis in the step-down unit had more coronary artery disease (6 of 12 patients [50%] versus 1 of 12 patients; P < 0.025) and peripheral vascular disease (6 of 12 versus 0 patients; P < 0. 004). Mean urea reduction ratio, hematocrit, and serum albumin values, as well as number of hospitalizations and mean days hospitalized for the 6-month study period, were not different between the groups. Patients undergoing dialysis in the step-down unit were more likely to have lower scores on activities of daily living (11 +/- 5 versus 15 +/- 3; P < 0.02), live in a nursing home (58% versus 8%; P < 0.01), be nonambulatory (66% versus 0%; P < 0. 01), and have a catheter as permanent dialysis access (66% versus 9%; P < 0.004). Significantly more social worker and dietitian time in hours per week were provided to the patients in the step-down unit (social workers, 259 versus 201 h/wk; P < 0.001; dietitians, 115 versus 96 h/wk; P < 0.001). Similarly, dialysis treatments requiring nursing interventions (treatments with hypotension, 36% versus 13%; obtaining blood cultures, 7% versus 2%; administering intravenous medications, 9% versus 2%; communicating with other health care providers, 3% versus 0.1%; and non-dialysis-related interventions, 5% versus 0.5%; all P < 0.005) were more common in the patients in the step-down unit. We conclude that increased dialysis provider care is required by patients who are functionally dependent and have increased comorbid conditions. The increased demands this fragile patient population places on dialysis providers must be recognized, examined more closely, and reimbursed appropriately.

Activities of Daily Living↗

PubMed2000

The safety and efficacy of GM-CSF as an adjuvant in hepatitis B vaccination of chronic hemodialysis patients who have failed primary vaccination.

BACKGROUND: End-stage renal disease and the need for chronic hemodialysis is an indication for hepatitis B vaccination, but up to half of dialysis patients fail to respond to a 40 microg/dose i.m. three-dose primary series of recombinant hepatitis B vaccine. Only another 10-20% respond to additional boosting doses of vaccine. PATIENTS AND METHODS: Since GM-CSF has been shown to be an effective adjuvant for hepatitis B vaccine in healthy subjects and multiple animal vaccine models, we conducted a randomized, double-blind trial of GM-CSF with recombinant hepatitis B vaccine in chronic hemodialysis patients. Patients with negative hepatitis B surface antibody and antigen who had received at least three doses of recombinant hepatitis B vaccine without response (antibody titre < 10 mIU/ml) were randomized to placebo, 40 microg, or 80 microg of GM-CSF given with 40 microg recombinant hepatitis B vaccine i.m. at the same site. Clinical and laboratory studies for safety assessment were done on days 1 and 3, and hepatitis B surface antibody titres were measured at baseline and days 21 and 180 after the study injections. RESULTS: No significant local or systemic toxicity was noted from the co-injections. The rates of response and geometric mean titre (GMT) were equivalent among all three study groups: placebo 6/10 developed antibodies, GMT 22.1 mIU/ml; 40 microg GM-CSF 3/10 developed antibodies, GMT 5.4 mIU; and 80 microg GM-CSF 3/8 developed antibodies, GMT 9.7 mIU/ml. Six months after vaccination, antibody titres were available for 11 of the 12 day 21 positive responders; only 4 of these 11 patients remained antibody positive at 6 months. CONCLUSION: GM-CSF given in a single 40 microg and 80 microg i.m. dose was not an effective adjuvant with hepatitis B vaccine in chronic hemodialysis patients who had previously failed to respond to hepatitis B immunization.

Adjuvants, Immunologic↗

PubMed2000

Advanced practice nurses in ESRD: varied roles and a cost analysis.

The predicted shortage of nephrologists to care for end-stage renal disease (ESRD) patients has prompted examination of the potential roles for physician extenders, such as physician assistants and nurse practitioners or advanced practice nurses (APNs) in the care of these patients. Although the case management model is ideally suited for the care of ESRD patients, little is known about incorporating APNs within this model in either dialysis or transplant programs. Furthermore, the cost-effectiveness of APNs working in dialysis units has been unexplored. We report our experience with APNs working in our dialysis and transplant programs, providing a description of their varied roles in the outpatient and inpatient settings that emphasizes the flexibility of the case management model in the care of ESRD patients. A time log survey completed by dialysis APNs outlines a mode for job responsibilities and shows that 93% of their time is spent in direct patient care. The dialysis cost analysis reveals that employment of a nurse practitioner is cost effective if the dialysis program includes at least 85 chronic dialysis patients. Additional studies of the impact of APNs in ESRD programs is needed.

Costs and Cost Analysis↗

PubMed1999

Dialysis patients' preferences for family-based advance care planning.

BACKGROUND: Most patients do not participate in advance care planning with physicians. OBJECTIVE: To examine patients' preferences for involving their physicians and families in advance care planning. DESIGN: Face-to-face interviews with randomly selected patients. SETTING: Community-based dialysis units in one rural and one urban region. PARTICIPANTS: 400 hemodialysis patients. MEASUREMENTS: Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care. RESULTS: Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001). CONCLUSION: Most patients want to include their families more than their physicians in advance care planning.

Adult↗

PubMed1999

Failure of advance care planning to elicit patients' preferences for withdrawal from dialysis.

Although withdrawal from dialysis is relatively common among dialysis patients, little is known about the patients' consideration of withdrawal during advance care planning. We studied a stratified random sample of 400 hemodialysis patients in two geographic areas (all six dialysis units within 75 miles of Morgantown, WV, and all nine dialysis units in Rochester, NY) by reviewing responses to a questionnaire addressing issues of advance care planning. Interviews were performed by trained interviewers during a routine hemodialysis treatment. Fifty-one percent of the patients had completed an advance directive (29% had a living will and a health care proxy, 22% had a living will or proxy). Patients who had completed advance directives were more likely to have notified their decision makers of their roles (91% with a living will and health care proxy, 81% with a living will or proxy v 55% who had no advance directive; P < 0.01). Most patients had not discussed their wishes for specific interventions in the event of permanent coma: 41% had discussed mechanical ventilation; 35%, tube feedings; 25%, cardiopulmonary resuscitation; and only 18% had discussed stopping dialysis. Patients who had completed a living will and proxy were most likely to have discussed end-of-life care, but stopping dialysis was the least often discussed intervention, even in this patient subset. Sixty-nine percent had discussed mechanical ventilation; 55%, tube feedings; 43%, cardiopulmonary resuscitation; and only 31% had discussed stopping dialysis (all P < 0.001). Although withdrawal from dialysis is relatively common, it is rarely discussed in advance care planning by dialysis patients. Dialysis unit staff and nephrologists should address issues involving withdrawal from dialysis with their chronic dialysis patients.

Adult↗

PubMed1998

An examination of the renal transplant evaluation process focusing on cost and the reasons for patient exclusion.

A medical evaluation of prospective renal transplant recipients is performed to identify conditions that may exclude patients from transplantation because of unacceptable risks. Protocols for evaluating potential transplant candidates are available, but there is little information about reasons for excluding patients from transplantation. To assess the effectiveness and cost of our renal transplant-recipient evaluation process, we retrospectively reviewed patients excluded from renal transplantation between January 1993 and December 1995 to categorize the reasons for exclusion. We also examined the costs of the evaluation. The study group included all adults referred for kidney-only transplantation during the study period who were excluded from transplantation (n=125). Demographics of the 160 patients with end-stage renal disease (ESRD) who underwent renal transplantation during the study period were also examined. Compared with the patients who underwent transplantation, the excluded patients were older (48+/-14 v 43+/-12 years; P=0.006) and more likely to be women (66 of 125 patients; 53% v 57 of 160 patients; 36%; P=0.005) and diabetic (59 of 125 patients; 47% v 30 of 160 patients; 19%; P=0.005). The most common reason for excluding patients was medical contraindication (46%), followed by patient declined (25%), obesity (10%, defined as a body mass index [BMI] > or = 35), patient death (6%), and insurance/financial (5%). The medical reasons for exclusion were heart disease (38%), noncompliance (28%), miscellaneous (22%), and cancer (12%). Tests performed after the initial evaluation included cardiac testing (stress thallium or echocardiography and coronary angiography) in 50 patients, Doppler studies of the lower extremities in 28 patients, and hepatitis C polymerase chain reaction (PCR) or recombinant immunoblot assay (RIBA) assays in 8 patients. The cost of standard pretransplantation blood work for selected tests (ABO blood group typing, HLA, hepatitis B and C, and cytomegalovirus) was $709. Deferring such routine pretransplantation blood work until after the patient education session and history and physical examinations by nephrology and surgery in the 31 patients (25%) who declined transplantation at the initial visit would have resulted in considerable savings. Our evaluation process now includes prereferral information on a prospective recipient's medical problems, height and weight, and basic screening laboratory tests. This protocol has resulted in a more efficient and cost-effective evaluation process. Further examination of the cost-effectiveness of the transplant evaluation process is warranted.

Adult↗

PubMed1998

Fertility and contraception in end-stage renal disease.

The hormonal aberrations that occur with end-stage renal disease (ESRD) are presented in this review in relation to fertility and conception among women on dialysis. The imbalance in gonadotropin production in dialysis-dependent men and women is characterized by elevations in luteinizing hormone (LH). In women dialysis patients, the normal estradiol-stimulated LH surge does not occur, resulting in anovulation. In men dialysis patients spermatogenesis is impaired, and low testosterone levels cause elevated LH. Infertility in those with ESRD is a culmination of many factors, including impotence and loss of libido, anovulation, and an altered hormonal milieu. Despite these inhibitors of conception, women on dialysis can conceive; pregnancy has been reported in 1% to 7% of women on dialysis in survey studies. The influence of dialysis mode (hemodialysis v peritoneal dialysis), recombinant human erythropoietin (EPO), and dialysis adequacy on the likelihood of conception among patients of either sex on dialysis is unknown. Reduced sexual activity and interest has consistently been reported in the ESRD population. The reasons for this are complex and likely involve the effects of comorbid illnesses, overall health status, body image factors, and hormonal alterations. Nephrologists rarely discuss conception and contraception with their women dialysis patients. Greater attention to these issues is needed.

Adult↗

PubMed1998

Nephrologists as primary care providers: a review of the issues.

Considering the role of nephrologists as primary care providers for their chronic dialysis patients requires exploration of a number of factors. These factors include the definition of a primary care provider, the time and expertise needed to provide primary care, the expectations of nephrologists and dialysis patients who give and receive primary care, the appropriate preventive care for end-stage renal disease (ESRD) patients, and the current and future roles of nephrologists within a changing health care environment. Unfortunately, few studies have addressed these issues, and there is little objective information on which to base guidelines and recommendations about nephrologist-directed primary care of ESRD patients. Most nephrologists spend a significant portion (30% to 35%) of their time caring for dialysis patients, and 90% report providing primary care to dialysis patients. Most dialysis patients view their nephrologist as their primary care provider. The increasingly aged and ill ESRD population will undoubtedly necessitate additional time and expertise for care from an understaffed nephrology work force. The increased use of advanced practice nurses and alliances with health care delivery systems under global capitation programs may develop into effective strategies to provide care for an increasing population of dialysis patients. The nonnephrologic health care needs, including specific and appropriate cancer screening and preventive health care protocols for ESRD patients whose life expectancies are significantly less than the general population, are unclear. The issues involved in considering nephrologists as primary caregivers for ESRD patients include these and other related factors, and will be discussed in this review.

Capitation Fee↗

PubMed1998

Reducing a peritoneal dialysis program's cost by changing from a vendor-provided to a program-provided system for general medical supplies: significant savings in CCPD.

An examination of the costs associated with outpatient chronic peritoneal dialysis prompted us to investigate the charges for general medical supplies used by patients on continuous ambulatory peritoneal dialysis (CAPD) and continuous cycling peritoneal dialysis (CCPD) in our hospital-owned, not-for-profit peritoneal dialysis program. The items used by patients to perform their dialysis exchanges and daily exit site care included 4 x 3 and 2 x 2 sterile gauze pads, antibacterial soap, masks, tape, and betadine swabsticks. The charges for these supplies when purchased from the dialysis vendor were compared with charges for the same items if purchased directly from hospital stores by the peritoneal dialysis program and then distributed to the patients. This initial analysis suggested a considerable savings if the peritoneal dialysis program provided the supplies. Based on this estimated savings, in July 1995, the peritoneal dialysis program changed from a vendor-provided to a program-provided system for general supplies used by CAPD and CCPD patients. This study examined the differences in charges expressed as $/patient-month for two periods: July 1994 to June 1995 (when all general medical supplies were provided by dialysis vendors directly to the CAPD and CCPD patients) and July 1995 to May 1996 (when the peritoneal dialysis program purchased general medical supplies from hospital stores and distributed these supplies directly to the patients). The median vendor charges for CAPD patients (n = 21 during 1994 to 1995 and n = 18 during 1995 to 1996) were not significantly different between the two periods. In fact, the charges were slightly higher during the 1995 to 1996 period ($1,264/patient-month v $1,193/patient-month during the vendor-provided period of July 1994 to June 1995, P = 0.67). The median vendor charges for patients on CCPD were significantly lower during the 1995 to 1996 period when the peritoneal dialysis program provided the general medical supplies used for CCPD ($1,110/patient-month v $1,389/patient-month during 1994 to 1995, P = 0.003). There were 30 CCPD patients during the 1994 to 1995 period and 27 patients on CCPD during 1995 to 1996. The total charges for CAPD and CCPD patients combined included dialysis vendor charges (dialysis solution, tubing, cycler rental) and charges from hospital stores. These total charges were lower in the July 1995 to May 1996 period when general medical supplies were purchased directly from hospital stores rather than from the dialysis vendors: $1,201/patient-month versus $1,360/patient-month (P = 0.03). The median hospital store charges rose slightly during the July 1995 to May 1996 period when supplies were purchased by the peritoneal dialysis program from hospital stores ($31/patient-month v $21/patient-month, P = 0.37, during the July 1994 to June 1995 period when general medical supplies were purchased directly from dialysis vendors). However, despite the rise in charges from hospital stores, an overall savings of $149/patient-month was achieved when the peritoneal dialysis program purchased and provided general medical supplies used by the peritoneal dialysis patients. This $149/patient-month equals $1,788 savings per dialysis year for each patient on peritoneal dialysis for that year. Significant savings in the cost of a chronic peritoneal dialysis program may therefore occur if less expensive sources for the general medical supplies used by CAPD and, especially, CCPD patients are found.

Contract Services↗

PubMed1998

Cryofibrinogenemia: an addition to the differential diagnosis of calciphylaxis in end-stage renal disease.

Cryofibrinogenemia is a disorder characterized by cryoprecipitation with variable clinical presentation that was first described by Korst and Kratochvil in 1955. Cryofibrinogen is a cold insoluble complex of fibrin, fibrinogen, and fibrin split products with albumin, cold insoluble globulin, factor VIII, and plasma proteins. Cryofibrinogenemia is associated with metastatic malignancies, collagen vascular diseases, and thromboembolic disorders and may be clinically asymptomatic or present with thromboembolic phenomena of skin and viscera. The pathogenesis of cryofibrinogenemia is unknown. It may be caused by the inhibition of fibrinolysis, leading to an accumulation of cryofibrinogen. Treatment of cryofibrinogenemia may include Stanozolol, plasmapheresis, and fibrinolytics. Cryofibrinogenemia simulates calciphylaxis clinicopathologically, because both may present with skin necrosis. Calciphylaxis has been reported in end-stage renal disease, but we report the first case of cryofibrinogen in a chronic dialysis patient. We suggest that in the appropriate clinical setting, cryofibrinogenemia should be considered in the differential diagnosis of calciphylaxis, and serum cryofibrinogen levels should be measured in end-stage renal disease patients presenting with skin necrosis.

Arterioles↗

PubMed1998

Nocardiosis in a recently transplanted renal patient.

Opportunistic infections are common after renal transplantation because of the use of immunosuppression. Nocardiosis is a rare but important cause of morbidity and mortality among renal transplant recipients. Depending upon the transplant center, the estimated incidence of nocardiosis among renal transplant recipients varies widely from 0 to 20%. We report the first case of nocardiosis in a recently transplanted renal patient maintained on tacrolimus, prednisone, and mycophenolate mofetil. It is likely that the nocardial infection in our patient was related to the development of her diabetes mellitus, and to her early episode of rejection and treatment which included high-dose steroids, and the addition of mycophenolate mofetil. Our case illustrates the importance of maintaining a heightened awareness so that nocardiosis may be diagnosed early and treated successfully.

Diabetes Complications↗

PubMed1997

Gynecologic and reproductive issues in women on dialysis.

Most women on dialysis are amenorrheic and do not ovulate, but little information about menstrual patterns in women on dialysis exists, especially since the introduction and use of recombinant human erythropoietin, a therapy that may improve sexual interest and function. In this study, women who were < or = 55 years of age at the start of dialysis (n = 76) completed questionnaires and form the study group. Women older than 55 years at the start of dialysis did not complete the entire questionnaire (n = 115), but their medication records were reviewed for estrogen replacement therapy. The questionnaire asked about pregnancies, menstrual periods (regularity, frequency, duration, character of flow, menopause), and menopause before beginning dialysis and currently. Women also responded to questions about sexual activity, use of birth control, contraception counseling by physicians, yearly Papanicolaou smears, and mammograms. Demographic data (age, race, age at the time dialysis started, mode of dialysis, use of recombinant human erythropoietin, and history of renal transplant) were also obtained through the questionnaires. Fifty-nine percent of the 76 women who completed the study were white and had been on dialysis a median of 3 years (range, 0.1 to 18 years). The median age was 43 years, 68% were on hemodialysis, 90% were receiving recombinant human erythropoietin, and 70% had been pregnant (a total of 179 pregnancies; four pregnancies in four women occurred after the start of dialysis). Significantly more women were menstruating before dialysis started than currently (63% v 42%; P < 0.025), but the difference could be explained by patient age: currently menstruating women were younger (37 +/- 9 v 46 +/- 11 years; P = 0.0002). More women reported menstrual regularity before beginning dialysis (75% v 42% currently; P < 0.005), but there were no differences in number of days between or number of days of menstruation before beginning dialysis and currently. Menstrual flow was reported as heavier currently by more women (64% heavy flow with clots v 38% before dialysis started; P < 0.05). The median age at menopause was 47 years; 28% of the women were postmenopausal. Fifty percent of the women were sexually active, but only 36% used birth control. Discussions between the women and their nephrologist about possible pregnancy and contraception were reported by only 13% of women. Sixty-three percent of the women reported having yearly Papanicolaou smears and 73% had had a mammogram. Only 5% of the 113 women who were older than 55 years when they began dialysis were receiving estrogen replacement therapy. Amenorrhea was reported in this study by a smaller proportion of women than in studies conducted before the introduction of recombinant human erythropoietin. The possibility that erythropoietin may restore normal hormonal cyclic function in women with end-stage renal disease requires further study. Nephrologists as well as primary care physicians and gynecologists need to focus more on the gynecologic concerns of women on dialysis, including the potential for pregnancy. The effects of estrogen replacement on atherosclerosis and osteoporosis, and consideration of such therapy in women on dialysis warrants attention.

Adolescent↗

PubMed1997

Factors influencing dialysis patients' completion of advance directives.

Although chronic dialysis patients support the use of advance directives, they rarely complete them. We asked 80 chronic dialysis patients (60 receiving in-center hemodialysis and 20 receiving peritoneal dialysis) why they had not completed an advance directive, and gave them the opportunity to complete a dialysis-specific living will and to designate a health care proxy. Questionnaires containing the dialysis-specific living will, patient demographic information, and questions about advance directives were distributed during a routine hemodialysis session or peritoneal dialysis clinic visit by a nurse working in the unit. Forty-one hemodialysis patients and 14 peritoneal dialysis patients completed the questionnaires (69% response rate). The mean age was 53 +/- 15 years and the mean time on dialysis was 5 +/- 5 years. Fifty-eight percent of the patients were women, 57% were white, 67% were hospitalized in the past year, 23% were employed, 70% had children, and 21% lived alone (43% lived with a partner and 11% lived with parents). All patients thought advance directives were a good idea, but only 35% had completed one and only seven (14%) had discussed wishes for life-sustaining therapy with their nephrologist; 34 patients (67%) had discussed their wishes with their family. Most said they had not completed an advance directive because their family knew what they would want (12 of 32 patients [38%]). Thirty-nine patients who completed the questionnaire also completed the dialysis-specific living will (71%). Those who did not complete the dialysis-specific living will chose not to because they were not sure what they would want done (12 of 16 patients [75%]). The only demographic factor that influenced completion of the dialysis-specific living will was having children: more patients with children did not complete the will (12 of 37 patients [32%] with children v two of 16 patients [13%] without children; P = 0.02). The dialysis-specific living will asks about choices for life-sustaining treatment (cardiopulmonary resuscitation and dialysis) based on one's health state (current health; permanent coma; terminal illness; mild, moderate, or severe stroke; dementia). Using patient-specific advance directives that focus on health states rather than life-sustaining interventions (eg, the dialysis-specific living will) and repeated discussion of advance directives and advance care planning initiated by dialysis unit staff may improve the completion of advance directives by chronic dialysis patients. The appropriate focus of such issues should include family involvement and health states rather than treatment interventions.

Adult↗

PubMed1996

Most nephrologists are primary care providers for chronic dialysis patients: results of a national survey.

The medical care of end-stage renal disease (ESRD) patients includes not only dialysis-related medical care but preventive and general medical care as well as the care of minor acute illnesses. There is little information about nephrologists' interpretation of their potential role as a primary health care provider for the general medical needs of chronic dialysis patients. To characterize nephrologists' primary care practice patterns related to the care of chronic dialysis patients, we surveyed a randomly selected group of practicing nephrologists and asked questions about preventive medicine guidelines followed, treatment of minor acute illnesses, and management of chronic medical problems in ESRD patients. The results of 233 questionnaires (46% response rate) were analyzed. Most of the responding nephrologists were men (91%), were board certified in internal medicine (96%) and nephrology (83%), were out of nephrology practice for a mean of 16 years, had a mean age of 48 +/- 7 years, and were in private practice (65%). The average percentage of time spent with chronic dialysis patients was reported as 30%; 38% of that time was devoted to the general medical care of those patients. Ninety percent of nephrologists reported that they provided primary care to their dialysis patients, and only 21% said a nurse practitioner or physician assistant worked with them. Age and number of years in practice were the only demographic factors increasing the likelihood of nephrologist-provided primary care, with older, more experienced practitioners more likely to be providing primary care to dialysis patients. Most nephrologists reported that they managed minor acute illnesses and comorbid conditions (diabetes mellitus, cardiac disease, and gastrointestinal disease) in their dialysis patients. Nephrology fellowship training programs and recertification programs may need to address issues of primary general health care of ESRD patients. Plans under development for health care programs and reimbursement criteria also need to recognize and consider the primary medical care role practiced by nephrologists caring for ESRD patients.

Data Collection↗

PubMed1996

Patients' views in the choice of renal transplant.

Little is known about chronic dialysis patients' reasons for electing renal transplantation. We investigated chronic dialysis patients' reasons for choosing to be listed or not listed for renal transplantation. Chronic dialysis patients were asked to complete a questionnaire consisting of demographic information and questions related to desire for transplantation and previous transplant experience. The mean age of the dialysis population was 48 +/- 15 years (range 16 to 81 years); the population was 61% women, 39% African American, and 26% diabetic. The questionnaires of the 95 patients eligible for transplantation were analyzed. Forty-four percent of the eligible patients were active on a transplant waiting list; 56% of patients refused transplantation. Twenty-nine percent of the surveyed patients had had at least one previous transplant. Listed patients were younger (43 vs. 52 years), had fewer years of ESRD (5 vs. 9 years), and were more likely to be on home dialysis therapy (55% vs. 32%). There were no differences between listed and unlisted patients in gender, race, years of education, marital status, children, diabetes mellitus, and previous transplant experience. African American patients reporting strong religious beliefs were less likely to be listed for transplantation (76% vs. 24%); religious beliefs were not related to white patients' listing for transplantation. The most reported reason for electing transplantation was "hoping for a better quality of life" (86% of respondents). More never-transplanted patients elected transplantation "hoping it will make me live longer" (69% vs. 25% with previous transplant) and because their doctor (50% vs. 6%) or family (42% vs. 6%) thought it was a good idea. Of patients who declined transplant, 92% with previous transplant experience indicated that the experience discouraged them from seeking retransplantation; 59% of patients without transplant experience reported that seeing what happened to others with a failed transplant affected their decision not to seek transplantation. Our findings suggest that race and gender differences in electing transplant may disappear when all patients are actively solicited for transplantation. However, older patients may be less likely to elect transplant because they are more satisfied with life on dialysis or less willing to take risks. Further study of patients' reasons for electing transplantation is required before demographic variations in transplant choices can be accurately interpreted.

Adolescent↗