DorAnne Donesky

Internet-based dyspnea self-management support for patients with chronic obstructive pulmonary disease

CONTEXT People with chronic obstructive pulmonary disease experience dyspnea with activities despite optimal medical management. OBJECTIVES The purpose of this study was to test the efficacy of two 12-month dyspnea self-management programs (DSMPs), Internet-based (eDSMP) and face-to-face (fDSMP), compared with a general health education (GHE) control on the primary outcome of dyspnea with activities. METHODS Participants with chronic obstructive pulmonary disease were randomized to eDSMP (n=43), fDSMP (n=41), or GHE (n=41). The content of the DSMPs were similar and focused on education, skills training, and coaching on dyspnea self-management strategies, including exercise, and only differed in the delivery mode. Dyspnea with activities was measured with the Chronic Respiratory Questionnaire at three, six, and 12 months. Secondary outcomes included exercise behavior and performance, health-related quality of life, self-efficacy for dyspnea management, and perception of support for exercise. The study was registered at Clinicaltrials.gov (NCT00461162). RESULTS There were no differences in dyspnea with activities across groups over 12 months (P=0.48). With the exception of arm endurance (P=0.04), exercise behavior, performance, and health-related quality of life did not differ across groups (P>0.05). Self-efficacy for managing dyspnea improved for the DSMPs compared with GHE (P=0.06). DSMP participants perceived high levels of support for initiating and maintaining an exercise program. CONCLUSION The DSMPs did not significantly reduce dyspnea with activities compared with attention control. However, the high participant satisfaction with the DSMPs combined with positive changes in other outcomes, including self-efficacy for managing dyspnea and exercise behavior, highlight the need for additional testing of individually tailored technology-enabled interventions to optimize patient engagement and improve clinically relevant outcomes.

Dyspnea in Idiopathic Pulmonary Fibrosis: A Systematic Review

CONTEXT Little is known about the treatment and correlates of dyspnea in idiopathic pulmonary fibrosis (IPF). OBJECTIVES The objective of this systematic review was to summarize the literature regarding the treatment and correlates of dyspnea in IPF. METHODS MEDLINE, EMBASE, and all Evidence-Based Medicine Reviews were searched for publications that evaluated treatment or correlates of dyspnea in IPF. Reference lists and recent review articles also were searched. RESULTS The heterogeneity of included studies did not permit meta-analysis. Dyspnea improved in studies of sildenafil, pulmonary rehabilitation, and prednisone with colchicine. Additional studies of these three treatments, however, found discordant results. One study suggested that assisted ventilation delivered by facemask improved exertional dyspnea. Oxygen and opioids improve dyspnea in other chronic lung diseases, but data in IPF are limited. Correlates of dyspnea included functional and physiological measures and comorbid diseases. CONCLUSION Sildenafil and pulmonary rehabilitation should be considered as potential therapies for dyspnea in selected patients with IPF. Supplemental oxygen and opioids may be additional potential therapies; however, the evidence supporting their use is weak. Additional research should focus on the management of functional status and comorbidities as potential treatments for dyspnea.

The Affective Dimension of Dyspnea Improves in a Dyspnea Self-Management Program With Exercise Training

CONTEXT The perception of dyspnea includes both sensory and affective dimensions that are shaped by emotions and psychological, social, and environmental experiences. Previous investigators have studied either measurement or strategies to decrease the affective dimension with laboratory-induced dyspnea. Few have reported the effect of a therapeutic clinical intervention on the affective dimension of dyspnea. OBJECTIVES (1) To evaluate the effects of three different versions of a dyspnea self-management program (DM) on the affective dimension of dyspnea, measured by dyspnea-related anxiety (DA) and dyspnea-related distress (DD); and (2) to determine the stability of DA and DD over two baseline incremental treadmill tests (ITTs). METHODS Participants with chronic obstructive pulmonary disease were randomly assigned to three 12 month DMs with varying doses of supervised exercise (DM, DM-Exposure, and DM-Training). The measurements of the affective dimension, DA and DD, were rated during ITTs on two baseline days and at two, six, and 12 months. Changes over time in DA and DD were analyzed using linear mixed-effects models. RESULTS Participants in the DM-Training group who received 24 nurse-coached exercise sessions had significantly greater reductions in DA and DD compared with those who had four exercise sessions (DM-Exposure) or only received a home-walking program (DM). Reductions in DA and DD in the DM-Training group were only maintained through six months. There were no significant differences in ratings of DA and DD at end between the two baseline ITTs. CONCLUSION These findings provide initial support for the positive impact of a self-management program with nurse-coached exercise on the affective dimension of dyspnea. Further investigation of interventions that target the affective dimension in addition to the sensory dimension of dyspnea should be encouraged.

The need to research refractory breathlessness.

The joint American Thoracic Society (ATS)/European Respiratory Society (ERS) statement “An official American Thoracic Society/European Respiratory Society statement: research questions in COPD” by Celli et al. [1] is a timely summary of the current evidence and the questions that arise directly from where that evidence reaches its limits. Such documents are crucial in framing research strategies for researchers and research funders. High-quality research is needed to improve quality of life for people with chronic refractory breathlessness in COPD http://ow.ly/Q2GDY

Determinants of Frequency, Duration, and Continuity of Home Walking in Patients with COPD

The purpose of this study was to identify determinants of frequency (days per week), duration (minutes per session), and continuity (persistence over 1 year) of home walking in 103 patients with chronic obstructive pulmonary disease (COPD) who participated in a dyspnea self-management program. Dimensions of home walking exercise were measured by logs and reports of biweekly telephone calls with the intervention nurse. The selection of personal, cognitive, and environmental determinants of home walking was guided by social cognitive theory. Participants walked more frequently if they were exercising before they entered the study, had less depressive symptoms, and were living with friends or family. Duration of walks was influenced by supervised exercise training; living with spouse, friends, or family; and physical conditioning. Participants who walked most consistently over the course of the year had more supervised exercise sessions as part of the dyspnea self-management program, exercised regularly before entering the program, and perceived a gain in social support over the year. These findings can be used to tailor exercise interventions to the specific needs of patients and improve the likelihood of consistent exercise participation.

Patterns of Technology Use in Patients Attending a Cardiopulmonary Outpatient Clinic: A Self-Report Survey

Background Self-management education for cardiopulmonary diseases is primarily provided through time-limited, face-to-face programs, with access limited to a small percentage of patients. Telecommunication tools will increasingly be an important component of future health care delivery. Objective The purpose of this study was to describe the patterns of technology use in patients attending a cardiopulmonary clinic in an academic medical center. Methods A prevalence survey was developed to collect data on participant demographics (age in years, sex, and socioeconomic status); access to computers, Internet, and mobile phones; and use of current online health support sites or programs. Surveys were offered by reception staff to all patients attending the outpatient clinic. Results A total of 123 surveys were collected between March and April 2014. Technological devices were a pervasive part of everyday life with respondents engaged in regular computer (102/123, 82.9%), mobile telephone (115/117, 98.3%), and Internet (104/121, 86.0%) use. Emailing (101/121, 83.4%), researching and reading news articles (93/121, 76.9%), social media (71/121, 58.7%), and day-to-day activities (65/121, 53.7%) were the most common telecommunication activities. The majority of respondents reported that access to health support programs and assistance through the Internet (82/111, 73.9%) would be of use, with benefits reported as better understanding of health information (16/111, 22.5%), avoidance of difficult travel requirements and time-consuming face-to-face appointments (13/111, 18.3%), convenient and easily accessible help and information (12/111, 16.9%), and access to peer support and sharing (9/111, 12.7%). The majority of patients did not have concerns over participating in the online environment (87/111, 78.4%); the few concerns noted related to privacy and security (10/15), information accuracy (2/15), and computer literacy and access (2/15). Conclusions Chronic disease burden and long-term self-management tasks provide a compelling argument for accessible and convenient avenues to obtaining ongoing treatment and peer support. Online access to health support programs and assistance was reported as useful and perceived as providing convenient, timely, and easily accessible health support and information. Distance from the health care facility and a lack of information provision through traditional health sources were both barriers and enablers to telehealth. This is particularly important in the context of a cardiopulmonary clinic that attracts patients from a large geographical area, and in patients who are most likely to have high health care utilization needs in the future. Telecommunication interfaces will be an increasingly important adjunct to traditional forms of health care delivery.

Family Members’ Experiences With Bereavement in the Intensive Care Unit

Background Losing a loved one in the intensive care unit can be challenging for families. Providing bereavement support may assist in the grieving process. Objective To describe family members’ experiences with bereavement after the death of a loved one in the intensive care unit. Methods This secondary analysis used an exploratory, descriptive design to study family members’ experiences with bereavement. Family members of patients from 2 intensive care units in a tertiary medical center in the western United States participated. Audiotaped telephone interviews using a semistructured questionnaire were conducted. A qualitative, descriptive technique was used for data analysis. Two independent raters coded transcripts of audiotaped interviews with family members about their bereavement experiences. Results Seventeen family members participated in the study. Most participants were female (n = 12; 71%) and spouses of deceased patients (n = 14; 82%), and their mean (SD) age was 62.4 (10.0) years. Three themes emerged: (1) bereavement was an individual experience; (2) situations occurring during the intensive care unit encounter remained significant for family members beyond a year after the death; and (3) social, cultural, spiritual, and religious events after the death hold importance for families of patients in the intensive care unit. Conclusions Bereavement is a challenging experience for families of deceased intensive care unit patients. The themes identified in this study add insight into the experiences of these family members. The results of this study may guide future interventions to help support bereaved families of intensive care unit patients.

Additional Evidence for the Long-Term Benefits of Pulmonary Rehabilitation

BACKGROUND: Pulmonary rehabilitation programs document outcomes to prepare for program certification, to demonstrate the value of the program to upper management, and to provide feedback to pulmonary rehabilitation staff regarding the efficacy of the program. The overall goal of this study was to evaluate the feasibility of using non-research-generated clinical data to report long-term outcomes following a pulmonary rehabilitation program. METHODS: Using a longitudinal descriptive design, all subjects who completed pulmonary rehabilitation at one community-based pulmonary rehabilitation program in the San Francisco Bay Area were asked to complete a 6-month and subsequent yearly questionnaires. Adherence to pulmonary rehabilitation techniques was described for 7 y following pulmonary rehabilitation participation, health-care utilization from 1 y before pulmonary rehabilitation was compared with subsequent years, and health-care utilization was compared between those who participated in ongoing regular exercise after pulmonary rehabilitation and those who did not exercise. RESULTS: More than 70% of subjects who completed the questionnaire reported adherence to pulmonary rehabilitation techniques, including exercise for at least 7 y following pulmonary rehabilitation. Health-care utilization declined after pulmonary rehabilitation. Subjects who did not exercise regularly required significantly more health care than those who exercised regularly (P < .05). CONCLUSIONS: This study demonstrated the ability of one pulmonary rehabilitation program to accurately monitor extended long-term follow-up after pulmonary rehabilitation. Implementing this long-term monitoring methodology consistently in pulmonary rehabilitation programs could contribute to evaluation of the comparative effectiveness of various treatment options.

Empowerment in people with COPD

License. The full terms of the License are available at http://creativecommons.org/licenses/by-nc/3.0/. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. Permissions beyond the scope of the License are administered by Dove Medical Press Limited. Information on how to request permission may be found at: http://www.dovepress.com/permissions.php Patient Intelligence 2016:8 7–20 Patient Intelligence Dovepress

Association Between Clinical Nurse Specialist's Presence and Open Visitation in US Intensive Care Units.

Background: Current evidence shows that an open visitation policy can benefit patients and families during intensive care unit (ICU) stays. Therefore, an unrestricted visitation policy in the ICU has been proposed as part of patient-centered care. Purpose: The purpose of this secondary analysis is to explore the likelihood of an ICU with a clinical nurse specialist (CNS) having an open visitation policy when compared with an ICU without a CNS. Design: This is a secondary analysis of a survey conducted between 2008 and 2009, describing the ICU visitation practices in more than 600 hospitals across the United States. Methods: &khgr;2 Analysis was performed comparing the presence of CNS in the ICU with visitation policies, with P < 0.05 considered statistically significant. Results: There were data from 347 hospitals used in the analysis, with 47 hospitals (13.5%) having open visitation policies. There were 108 hospitals (31%) that had a CNS present in the ICU; 14 of the hospitals (13%) had open visitation policies. No significant correlation was found between a CNS being present in the ICU and open visitation policy (odds ratio, 0.93; P = .83), regardless of hospital geographic regions. Conclusions: Although CNS presence was not associated with open visitation in this study, given the strong evidence to support the benefits to patients and the CNS role as a change agent in the hospital system, liberalization of visitation in the ICU is an area that could benefit from CNS advocacy.