Caregivers' Willingness to Pay for Technologies to Support Caregiving.

PURPOSE OF THE STUDY: We report the results of a study designed to assess whether and how much informal caregivers are willing to pay for technologies designed to help monitor and support care recipients (CRs) in performing kitchen and personal care tasks. DESIGN AND METHODS: We carried out a web survey of a national sample of adult caregivers (age 18-64) caring for an older adult (N = 512). Respondents completed a 25min online survey that included questions about their caregiving situation, current use of everyday technology, use of specific caregiving technologies, general attitudes toward technology, and questions about technologies designed to help them monitor and provide assistance for CRs' kitchen and self-care activities. RESULTS: About 20% of caregivers were not willing to pay anything for kitchen and self-care technologies. Among those willing to pay something, the mean amount was approximately $50 per month for monitoring technologies and $70 per month for technologies that both monitored and provided some assistance. Younger caregivers, those caring for a person with Alzheimer's disease, and caregivers with more positive attitudes toward and experience with technology were willing to pay more. Most caregivers feel that the government or private insurance should help pay for these technologies. IMPLICATIONS: Caregivers are receptive and willing to pay for technologies that help them care for their CR, although the amount they are willing to pay is capped at around $70 per month. The combination of private pay and government subsidy may facilitate development and dissemination of caregiver technologies.

Advancing the Aging and Technology Agenda in Gerontology.

Interest in technology for older adults is driven by multiple converging trends: the rapid pace of technological development; the unprecedented growth of the aging population in the United States and worldwide; the increase in the number and survival of persons with disability; the growing and unsustainable costs of caring for the elderly people; and the increasing interest on the part of business, industry, and government agencies in addressing health care needs with technology. These trends have contributed to the strong conviction that technology can play an important role in enhancing quality of life and independence of older individuals with high levels of efficiency, potentially reducing individual and societal costs of caring for the elderly people. The purpose of this "Forum" position article is to integrate what we know about older adults and technology systems in order to provide direction to this vital enterprise. We define what we mean by technology for an aging population, provide a brief history of its development, introduce a taxonomy for characterizing current technology applications to older adults, summarize research in this area, describe existing development and evaluation processes, identify factors important for the acceptance of technology among older individuals, and recommend future directions for research in this area.

User-centered design and interactive health technologies for patients.

Despite recommendations that patients be involved in the design and testing of health technologies, few reports describe how to involve patients in systematic and meaningful ways to ensure that applications are customized to meet their needs. User-centered design is an approach that involves end users throughout the development process so that technologies support tasks, are easy to operate, and are of value to users. In this article, we provide an overview of user-centered design and use the development of Pocket Personal Assistant for Tracking Health (Pocket PATH) to illustrate how these principles and techniques were applied to involve patients in the development of this interactive health technology. Involving patient-users in the design and testing ensured functionality and usability, therefore increasing the likelihood of promoting the intended health outcomes.

Palliative care referrals after lung transplantation in major transplant centers in the United States.

OBJECTIVE: Although lung transplantation is a widely used treatment modality for patients with end-stage lung disease, its long-term outcomes are limited. Including palliative approaches in the care of lung transplant recipients may be beneficial; however, systematic information regarding the utilization of palliative care services for lung recipients is lacking. DESIGN AND SETTING: Of the 27 transplant centers meeting the inclusion criteria (an annual lung transplant volume >or=15 for the past 5 years and the availability of palliative care or pain services at the center), 74 clinicians representing either the transplant or palliative care program from 18 centers completed surveys. RESULTS: Both transplant and palliative care clinician respondents strongly favored the idea of integrating palliative care into lung transplant care. However, the number of palliative care referrals made during the last year was low (

Course of illness after the onset of chronic rejection in lung transplant recipients.

BACKGROUND: Despite the overall negative impact of chronic rejection on quality of life and survival after lung transplant, the specific clinical indicators of deterioration have not been identified. OBJECTIVES: To describe the course of illness after the onset of chronic rejection, including demographic and transplant variables, morbidity, mortality, health resource utilization, and end-of-life care, and to identify clinical indicators of deterioration in health and limited survival after the onset of chronic rejection. METHODS: The medical records of 311 recipients of lung transplants between 1998 and 2004 were reviewed retrospectively to identify 60 recipients who experienced chronic rejection. RESULTS: Median survival after chronic rejection was 31.34 months. Time to rejection (mean, 26.05 months; SD, 16.85) was significantly correlated with overall survival without need of a retransplant (r = 0.64; P < .001). The earlier the onset of chronic rejection or the need for oxygen at home, the shorter was the period of survival after chronic rejection and the more frequent were hospital and intensive care unit admissions and prolonged stays. Of the 26 recipients who died, 65% died at the transplant center, and all but 1 died in the intensive care unit; 3 died after multiple attempts of cardiopulmonary resuscitation; life support was ultimately withdrawn in 69%. CONCLUSIONS: Lung transplant recipients who experience chronic graft rejection have high rates of morbidity, mortality, and health resource utilization; however, the course of illness after chronic rejection is highly variable.

Meta-analysis of risk for relapse to substance use after transplantation of the liver or other solid organs.

For patients receiving liver or other organ transplants for diseases associated with substance use, risk for relapse posttransplantation is a prominent clinical concern. However, there is little consensus regarding either the prevalence or risk factors for relapse to alcohol or illicit drug use in these patients. Moreover, the evidence is inconsistent as to whether patients with pretransplantation substance use histories show poorer posttransplantation medical adherence. We conducted a meta-analysis of studies published between 1983 and 2005 to estimate relapse rates, rates of nonadherence to the medical regimen, and the association of potential risk factors with these rates. The analysis included 54 studies (50 liver, 3 kidney, and 1 heart). Average alcohol relapse rates (examined only in liver studies) were 5.6 cases per 100 patients per year (PPY) for relapse to any alcohol use and 2.5 cases per 100 PPY for relapse with heavy alcohol use. Illicit drug relapse averaged 3.7 cases per 100 PPY, with a significantly lower rate in liver vs. other recipients (1.9 vs. 6.1 cases). Average rates in other areas (tobacco use, immunosuppressant and clinic appointment nonadherence) were 2 to 10 cases per 100 PPY. Risk factors could be examined only for relapse to any alcohol use. Demographics and most pretransplantation characteristics showed little correlation with relapse. Poorer social support, family alcohol history, and pretransplantation abstinence of < or =6 months showed small but significant associations with relapse (r = 0.17-0.21). Future research should focus on improving the prediction of risk for substance use relapse, and on testing interventions to promote continued abstinence posttransplantation.

Risk profile for cardiovascular morbidity and mortality after lung transplantation.

Transplant recipients have an unfavorable cardiovascular risk profile and experience more cardiovascular morbidity and mortality compared with the general population, primarily because of immunosuppressant-induced diabetes, hypertension, and hyperlipidemia. These discouraging prospects are even more ominous for lung transplant recipients who are more likely than other organ recipients to require intense immunosuppression and develop these conditions early and concomitantly. The purposes of this article are to heighten awareness of the prevalence, risk factors, and management of diabetes, hypertension, and hyperlipidemia in lung transplant patients, and to assist nurses to be proactive in helping recipients to reduce the likelihood of developing cardiovascular complications.

Adherence to the medical regimen during the first two years after lung transplantation.

BACKGROUND: Despite the importance of adherence to the medical regimen for maximizing health after lung transplantation, no prospective studies report on rates or risk factors for nonadherence in this patient population. Whether adherence levels differ in lung versus other types of transplant recipients is unknown. METHODS: A total of 178 lung recipients and a comparison group of 126 heart recipients were enrolled. Adherence in nine areas was assessed in separate patient and family caregiver interviews 2, 7, 12, 18, and 24 months posttransplant. Potential risk factors for nonadherence were obtained at the initial assessment. RESULTS: Cumulative incidence rates of persistent nonadherence (i.e., nonadherence at > or =2 consecutive assessments) were significantly lower (P<0.05) in lung recipients than heart recipients for taking immunosuppressants (13% nonadherent vs. 21%, respectively), diet (34% vs. 56%), and smoking (1% vs. 8%). Lung recipients had significantly higher persistent nonadherence to completing blood work (28% vs. 17%) and monitoring blood pressure (70% vs. 59%). They had a high rate of spirometry nonadherence (62%; not measured in heart recipients). The groups did not differ in nonadherence to attending clinic appointments (27%), exercise (44%), or alcohol limitations (7%). In both groups, poor caregiver support and having only public insurance (e.g., Medicaid) increased nonadherence risk in all areas. CONCLUSIONS: Lung recipients were neither uniformly better nor worse than heart recipients in adhering to their regimen. Lung recipients have particular difficulty with some home monitoring activities. Strategies to maximize adherence in both groups should build on caregiver support and on strengthening financial resources for patient healthcare requirements.

Evaluation of the electronic version of the questionnaire for lung transplant patients.

UNLABELLED: Context-Recent modifications to the QLTP (Questionnaire for Lung Transplant Patients), including changing items from dichotomous to multiple dimension scaling, adding psychological symptoms, and converting to an electronic format (e-QLTP), made it necessary to reevaluate its reliability, validity, recipient satisfaction, and feasibility of administering the e-QLTP in the clinical setting. Purpose-To report the final modifications, psychometric properties, recipient satisfaction, and feasibility of administering the e-QLTP, a patient report outcome measure of symptoms and activity tolerance. Methods-Sixty lung recipients completed the original QLTP and the e-QLTP and rated their satisfaction with the e-version during a routine posttransplant evaluation; 65% (38 of 60) also completed a retest version. Correlations were computed for retest stability, concurrent validity between versions of the QLTP, and construct validity among the subscales of the e-QLTP and forced expiratory volumes in 1 second. Using the After Scenario Questionnaire, participants rated their satisfaction with the ease, amount of time, and support information when completing the e-QLTP. RESULTS: The e-QLTP and subscales were internally consistent (alpha = .73 - .90) and stable (intraclass correlations = .47 - .93). Significant correlations (P = .001) were found between the e-QLTP and the original QLTP (r = 0.53-0.56) and between the e-QLTP subscales and forced expiratory volumes in 1 second (r = 0.51 - 0.53). The overall mean satisfaction score was 1.27 (+/- 0.47). Conclusions-The e-QLTP is a reliable and valid measure of physical and psychological symptoms after lung transplantation. It is feasible to complete in the clinical setting and recipients are highly satisfied with its use. Its computerized functionality enhances assessment and management of symptoms over time.

Rates and risk factors for nonadherence to the medical regimen after adult solid organ transplantation.

BACKGROUND: Despite the impact of medical regimen nonadherence on health outcomes after organ transplantation, there is mixed and conflicting evidence regarding the prevalence and predictors of posttransplant nonadherence. Clinicians require precise information on nonadherence rates in order to evaluate patients' risks for this problem. METHODS: A total of 147 studies of kidney, heart, liver, pancreas/kidney-pancreas, or lung/heart-lung recipients published between 1981 and 2005 were included in a meta-analysis. Average nonadherence rates were calculated for 10 areas of the medical regimen. Correlations between nonadherence and patient psychosocial risk factors were examined. RESULTS: Across all types of transplantation, average nonadherence rates ranged from 1 to 4 cases per 100 patients per year (PPY) for substance use (tobacco, alcohol, illicit drugs), to 19 to 25 cases per 100 PPY for nonadherence to immunosuppressants, diet, exercise, and other healthcare requirements. Rates varied significantly by transplant type in two areas: immunosuppressant nonadherence was highest in kidney recipients (36 cases per 100 PPY vs. 7 to 15 cases in other recipients). Failure to exercise was highest in heart recipients (34 cases per 100 PPY vs. 9 to 22 cases in other recipients). Demographics, social support, and perceived health showed little correlation with nonadherence. Pretransplant substance use predicted posttransplant use. CONCLUSIONS: The estimated nonadherence rates, overall and by transplant type, allow clinicians to gauge patient risk and target resources accordingly. Nonadherence rates in some areas--including immunosuppressant use--appear unacceptably high. Weak correlations of most patient psychosocial factors with nonadherence suggest that attention should focus on other classes of variables (e.g., provider-related and systems-level factors), which may be more influential.

Advance care planning after lung transplantation: a case of missed opportunities.

After lung transplantation, recipients are regularly evaluated by the transplant team and often require multiple hospitalizations. The primary focus of care during this time is on detecting and treating complications and may not necessarily include advance care planning discussions. This focus may leave clinicians unaware of the recipient's treatment preferences and place a burden on families trying to decide whether to undergo or forgo life-sustaining treatment when the recipient's medical condition deteriorates. We report the case of a woman with bronchiolitis obliterans who was admitted to the transplant center 37 times and died in the intensive care unit. Although progressive deterioration of her medical condition was well documented, her medical records revealed no evidence of advance care planning discussions with the patient and family. Incorporating timely advance care planning and integrating palliative care in the ongoing posttransplant clinical management may benefit patients, families, and clinicians as recipients approach the final stage of their illness.

Are symptom reports useful for differentiating between acute rejection and pulmonary infection after lung transplantation?

BACKGROUND: Prompt treatment of acute rejection and pulmonary infection reduces morbidity and mortality in lung transplant recipients. Symptoms, spirometry, and bronchoscopy are used to detect these complications. Of these, symptom reporting is the least invasive, yet has received little critical examination. OBJECTIVE: To examine the potential for using reports of symptoms, such as cough and shortness of breath, to recognize clinically significant acute rejection and pulmonary infection after lung transplantation. METHODS: Symptoms reported during routine follow-up visits were compared between lung transplant recipients (LTR) with clinically significant acute rejection (grade >or= A2) and those without (grade A0 or A1) and between LTR with rejection (grade >or= A2) and those with pulmonary infection. RESULTS: LTR with rejection (grade >or= A2) reported more symptoms (P < .01) than did those without (grade A0, A1); however, the magnitude of difference was minimal. LTR with clinically significant acute rejection (grade >or= A2) reported symptoms at a rate comparable with those having pulmonary infection. CONCLUSIONS: Although symptoms may alert LTR to changes in their condition, no symptoms (respiratory, general, or activities of daily living [ADL]) differentiate between grades of rejection or pulmonary infection.

Striving for normalcy: symptoms and the threat of rejection after lung transplantation.

The purpose of this paper is to describe the psychosocial process of the symptom experience associated with the threat of organ rejection after lung transplantation. A grounded theory approach, including theoretical sampling and constant comparative analyses, was used in a sample of 14 lung transplant recipients who varied in age, gender, underlying lung disease, experience with rejection, and time since transplantation. 'Striving for normalcy' was the core process linking each of the four stages of the symptom experience and interpretation: naïveté, vulnerability, discovery, and insight. Each stage was marked by an initiating event, a predictable symptom response, and a dialectic (an internal struggle between recipients' personal perceptions of the situation and the juxtaposed understandings of the situation that they gleaned from transplant clinicians). Each stage was also labeled with a descriptor of the aspect of striving for normalcy that accounted for the variation in the symptom responses that recipients exhibited, the dialectics they faced, and the exemplars for each stage of the process. During the stage of naïveté, recipients were elated at improvements after transplantation, and often denied or delayed reporting symptoms. Once they experienced a rejection episode they entered the stage of vulnerability and became more vigilant about symptoms. The discovery stage was marked by the realization that rejection lacked characteristic symptoms; therefore, it was important to recognize any changes from their baseline condition. Recipients who achieved the insight stage realized that until they gave up some independence in exchange for interdependence, extended periods of normalcy eluded them, and embraced a reciprocal relationship with the transplant team. Knowledge that recipients' experience evolves over time from furtive hope during the stage of naïveté to qualified hope during the insight stage, directs us to intervene using stage-specific interventions to promote better symptom recognition and reporting.

Using conceptual triangulation to develop an integrated model of the symptom experience of acute rejection after lung transplantation.

The aim of this study was to develop a comprehensive model of the symptom experience associated with the development of acute rejection after lung transplantation by integrating the findings from a theory-testing quantitative study that explored the physiologic aspects and a theory-generating qualitative study that explored the interpretive aspects. Findings from the multimethod studies were integrated using conceptual triangulation methods described by Foster (Adv Nurs Sci. 1997;20:1-12). The integrated model will guide the development of interventions to promote effective patterns of symptom recognition and reporting of acute rejection.

Validation and refinement of the Questionnaire for Lung Transplant Patients.

CONTEXT: The Questionnaire for Lung Transplant Patients was designed to assess symptoms and activity tolerance in lung transplant recipients during their post-transplant evaluations. The initial psychometric evaluation determined that the questionnaire was clinically useful, reliable, and valid. OBJECTIVE: To report the results of further psychometric analyses in a new, expanded sample of lung transplant recipients and to demonstrate the iterative manner by which instruments are refined and tested. METHODS: Internal consistency, test-retest stability, convergent validity, factorial validity, and group differences attributable to age, gender, and transplant type were determined in a pooled sample of 177 lung transplant recipients. Sensitivity to change over time was measured in a subsample (n = 51) who provided repeated measures data. RESULTS: The Questionnaire for Lung Transplant Patients and its subscales were internally consistent (Kuder Richardson reliability of 0.73-0.95). Test-retest stability was high (intraclass correlations >0.70). Symptoms showed a significant curvilinear pattern with a tendency to decrease over time before rising again at the 12-month measurement for the total questionnaire (F=6.8, P=.012) and 2 subscales--Respiratory (F=5.6, P=.022) and Activities of Daily Living (F=19.7, P<.001). Convergent construct validity correlations ranged from 0.29 to 0.53 and were consistent with theoretical expectations. Factorial analysis confirmed 3 domains that coincided with the Respiratory, General, and Activities of Daily Living subscales. CONCLUSIONS: The Questionnaire for Lung Transplant Patients is a reliable and valid measure for assessing physical symptoms and activity intolerance after lung transplantation in individual recipients, recipients in aggregate, and comparison groups, on one occasion and serially over time. These results will guide future refinement and testing of the Questionnaire for Lung Transplant Patients.

Psychosocial vulnerability, physical symptoms and physical impairment after lung and heart-lung transplantation.

BACKGROUND: Many lung and heart-lung transplant recipients experience distressing physical symptoms and elevated physical impairment levels. Although post-transplant complications and secondary illnesses may largely account for these health limitations, patients' psychosocial well-being may influence them as well. We examined the contribution of psychosocial variables to patients' experience of physical symptoms and physical impairment. METHODS: The study consisted of a cross-sectional sample of 50 patients (36 lung, 14 heart-lung) at between 2 and 17 months post-transplant. They were interviewed to assess physical symptoms, current physical impairment and psychosocial well-being in the areas of mental health, sense of mastery and coping. Medical record reviews established the presence of medical complications and secondary illnesses concurrent with the interviews. Descriptive analyses examined the range of symptoms and levels of physical impairment experienced. Bivariate analyses and multivariate linear regression examined relationships between key variables. RESULTS: Average number of physical symptoms and level of physical impairment met or exceeded levels reported in other transplant samples. Elevated depressive and anxiety symptoms, a low sense of mastery, and the presence of concurrent medical complications were each associated with increased number of physical symptoms and physical impairment level. When the impact of concurrent medical complications was controlled, recipients with elevated psychologic distress remained significantly more likely to report more physical symptoms and higher physical impairment levels. CONCLUSIONS: Patients' physical health status may be influenced by many factors. To the extent that psychologic distress increases the likelihood of perceived physical limitations, timely identification and treatment of distress may help to maximize quality of life after lung and heart-lung transplantation.

Evaluating the reliability and validity of the Questionnaire for Lung Transplant Patients.

CONTEXT: The Questionnaire for Lung Transplant Patients was designed for clinical use by the pulmonary transplant team in the routine evaluation of lung transplant recipients. Using the self-administered questionnaire, recipients check symptoms that they have had since their last evaluation and rate their shortness of breath, cough, and activity tolerance. OBJECTIVE: To determine whether the questionnaire meets reliability and validity standards for empirical measurement. METHODS: Demographics and disease-severity characteristics were examined in a cross-sectional survey of 37 recipients. Test-retest and intraclass correlation methods were used to estimate stability, and the Cronbach alpha was used to estimate internal consistency. Criterion validity was examined by using The Modified Symptom Frequency/Symptom Distress Scale, Functional Performance Inventory, and visual analog scales for cough and shortness of breath as criterion measures. Construct validity was examined to assess the predicted negative correlation between symptoms and functional performance. RESULTS: The questionnaire and its subscales were internally consistent (Cronbach alpha = 0.82, 0.76, 0.80, and 0.96), and the questionnaire was stable (r = 0.70) and reliable (intraclass correlations = 0.80 and 0.90). Significant correlations were found between the questionnaire and all criterion measures (r = 0.50-0.93). Significant correlations in the predicted negative direction were found between the respiratory subscale and functional performance (r = -0.51) and between cough (r = -0.51) and shortness of breath (r = -0.68) ratings and functional performance. CONCLUSIONS: The Questionnaire for Lung Transplant Patients is reliable and valid, and it provides scientifically sound information for clinical and empirical evaluation of symptoms and their effects on activity tolerance after lung transplantation.