Annette McDonough

Cluster analysis of symptoms in pulmonary arterial hypertension: a pilot study

Background: Pulmonary arterial hypertension (PAH) is characterized by elevated pulmonary artery pressures leading to right heart failure and death. Aims: The aim of this study was to use cluster analysis to describe the symptom profile in PAH and differences in the health outcomes of health status, health-related quality of life (HRQoL) and psychological states in the cluster groups. Methods: A cross-sectional descriptive design was used. A convenience sample completed a socio-demographic and clinical data form, a PAH Symptom Severity and Interference Scale, the Medical Outcomes Study Short Form (SF-36), the United States Cambridge Pulmonary Hypertension Outcome Review (US CAMPHOR) and the Short Form of the Profile of Mood States (POMS). Results: Of the 151participants, the mean age was 53.5 ± 15.1 with the majority female (n = 128, 85%). Fifty-eight (41%) were disabled and 67 (44%) were Functional Class IV. The most prevalent symptoms were shortness of breath with exertion (n = 149, 99%) and fatigue (n = 144, 93%). Three clusters emerged: Cluster 1 diffuse symptoms (n = 93), Cluster 2 severe cardiopulmonary symptoms (n = 32) and Cluster 3 moderate cardiopulmonary symptoms (n = 26). Overall, on the SF-36 the participants had poor general health, reduced physical function, role physical, vitality, and a low composite score for physical health. On the POMS the sample had limited vigor and increased fatigue. Cluster 2 Severe Cardiopulmonary Symptoms had worse SF-36, US CAMPHOR and POMS scores than the other cluster groups. Conclusions: Patients with PAH are experiencing a constellation of symptoms that are interfering with their life and emerging clusters were present.

Symptom experience of pulmonary arterial hypertension patients.

Purpose: To describe symptoms experienced by pulmonary arterial hypertension (PAH) patients and the impact these symptoms have had on their lives. Method: Qualitative descriptive methodology was chosen incorporating semistructured interviews to investigate the symptom experience of ten patients with PAH. Results: All patients were diagnosed with WHO Group 1 PAH and 70% were WHO functional Class III. Two overarching themes emerged: holding back and redefining life. Holding back was represented by three sub-themes: fear, anticipation of worsening symptoms, and treatment effects. Redefining life was characterized by uncertainty, activity restrictions, and making the best of it. Conclusion: This study revealed specific concerns related to the symptom experience of PAH patients and how they redefined their lives to accommodate these symptoms. These findings provide a basis for larger, quantitative studies to examine the extent of symptom impact as well as a framework for development of self management interventions to improve the symptom experience and QOL.

Health-related quality of life and psychological states in patients with pulmonary arterial hypertension.

Background:Pulmonary arterial hypertension (PAH) is a chronic illness that impairs physical function and leads to right-sided heart failure and premature death. There is limited knowledge on health-related quality of life (HRQOL) and psychological states in patients with PAH. Objective:The aim of this study was to determine the HRQOL and the psychological states of patients with PAH along with predictors of HRQOL. Methods:In a cross-sectional design, participants with PAH completed the Medical Outcomes Study Short Form-36 v2 to measure generic HRQOL, the US Cambridge Pulmonary Hypertension Outcome Review to measure disease-specific HRQOL, and the Profile of Mood States to measure the psychological states. Descriptive statistics were used to calculate all sociodemographic and clinical data and were expressed as means and standard deviations for continuous variables and as frequencies and proportions for dichotomous and nominal variables. The statistical significance level was set at P < 0.05. A multiple linear regression analysis was performed to examine the sociodemographic and clinical variables as predictors of HRQOL. A bivariate analysis of the sociodemographic and clinical variables was performed to determine correlates with HRQOL. The variables that correlated with HRQOL at the 0.20 level of significance were included. Results:There were 149 participants, 127 women and 22 men, with a mean age of 53.5 years. The participants demonstrated diminished general health, physical functioning, role physical, and vitality on the Short Form-36 v2. Functional class, education level, oxygen use, years since diagnosis, and calcium channel blocker therapy were predictive of poorer HRQOL. Conclusions:Patients with PAH are experiencing diminished physical health and HRQOL. Future studies are needed to design and test interventions to improve HRQOL.

The experiences and concerns of young adults (18-40 years) living with an implanted cardioverter defibrillator (ICD).

Background: Although the implanted cardioverter defibrillator (ICD) is a widely accepted life-saving technology, adjusting to life after ICD implantation may vary according to the recipients age. Few studies have investigated how young adults manage life with an ICD and there are no studies describing their concerns or experiences of living with an ICD. Aim: The aim of the study was to describe the experiences and concerns of young adults (18–40 years) living with an ICD. Methods: Qualitative descriptive methodology was chosen incorporating interviews and written narrative responses to investigate twenty young adults experiences of living with an ICD. Results: There were four descriptive categories: psychosocial, developmental, physical, and economical. Themes in the psychosocial category were: returning to normal, mood disturbances, and body image concerns. Themes in the developmental category were unique to young adults: childbearing and childrearing, while themes in the physical category were expectation regarding physical activity, and the economical category, the issue of financial security. Conclusions: These data reveal that young adults with ICDs experience the unique concerns of childbearing, childrearing, and are worried about their financial security. These findings provide insight for the development of age-appropriate interventions for young adults before and after ICD implantation.

A Virtual Community: Concerns of Patients With Pulmonary Hypertension

Pulmonary Hypertension (PH) is a complex disorder characterized by elevated pressures in the pulmonary artery that cause right heart failure and eventually leads to death. Treatment regimens can be complex and mortality is high. The purpose of this study was to determine how people with PH are using an online Discussion Board. Qualitative descriptive methodology was used to analyze a convenience sample of self-identified patients with PH. Internet posts to an online Discussion Board from January 1, 2010 to December 31, 2010 were analyzed for common themes. Five hundred forty-nine individuals with PH posted to the Discussion Board. Four themes emerged: Uncertainty and Concern, Guidance and Validation, Support, and Refocusing Life. People with PH are using the Internet to answer questions about PH and seeking support. Future research needs to be conducted to further explore the needs and concerns of people with PH to provide tailored interventions.

Predictors of Health-Related Quality of Life in Patients With Idiopathic Pulmonary Arterial Hypertension

Idiopathic pulmonary arterial hypertension is a debilitating disease that leads to right ventricular heart failure and death. There is limited research on how this disease affects patients. The purpose of this study was to describe differences in health status, health-related quality of life, and psychological states among functional classes along with predictors of health-related quality of life. A convenience sample of 104 participants with idiopathic pulmonary arterial hypertension was recruited. Participants completed a sociodemographic and clinical data form; Medical Outcomes Study Short-Form 36, US Cambridge Pulmonary Hypertension Outcome Review, and Profile of Mood States surveys. The mean age was 51.9 (SD, 16.6) years, and 81 (78%) were female. Patients with functional class IV had significantly worse self-reported physical health status, health-related quality of life, and psychological distress than the other functional classes. Predictors of health-related quality of life were role-emotional (Medical Outcomes Study Short-Form 36), symptoms and activity (US Cambridge Pulmonary Hypertension Outcome Review), depression (Profile of Mood States), employment, and diuretic and oxygen use, accounting for 86% of the variance. These factors need to be monitored and assessed with patients with idiopathic pulmonary arterial hypertension especially as functional class increases. Effective symptom management is necessary to reduce the negative impact on health-related quality of life. A case study is presented to illustrate these points.

Sleep disturbance, symptoms, psychological distress, and health-related quality of life in pulmonary arterial hypertension

Background: Pulmonary arterial hypertension (PAH) is a devastating disease characterized by elevated pulmonary pressures that lead to right heart failure and premature mortality. Patients experience multiple symptoms including dyspnea, fatigue and chest pain, but little is known about sleep disturbance, PAH symptoms, psychological distress and health-related quality of life (HRQOL) in PAH. Aim: The purpose of this study was to describe the occurrence of sleep disturbance and compare PAH symptoms, psychological distress, and HRQOL across severity of sleep disturbance. Methods: One hundred and ninety-one participants completed a socio-demographic and clinical data form, PAH Symptom Severity Scale, Profile of Mood States (POMS) short form and the Medical Outcomes Short Form-36 (SF-36). Descriptive statistics were used to describe sleep disturbances; analysis of variance models were used to quantify differences in PAH symptoms, psychological distress and HRQOL by sleep disturbance groups. Results: The majority of participants (n=162, 85%) were women with a mean age of 53 years. Sixty-five (34%) reported no sleep disturbance; 54 (28%) mild sleep disturbance; 41 (22%) moderate sleep disturbance; and 31 (16%) severe sleep disturbance. Those reporting higher sleep disturbance severity reported worse PAH symptoms, psychological distress, and HRQOL. Conclusions: Sleep disturbance is a significant finding in PAH. Increasing levels of sleep disturbance are associated with worse PAH symptoms, psychological states, and health-related quality of life. Interventions that decrease sleep disturbances may improve symptoms and HRQOL.

Symptom Prevalence, Symptom Severity, and Health-Related Quality of Life Among Young, Middle, and Older Adults With Pulmonary Arterial Hypertension

Pulmonary arterial hypertension (PAH) is a chronic, life threatening illness that affects primarily women. The purpose of this study was to describe the prevalence of PAH symptoms and to determine whether there are differences in symptom severity and HRQOL in PAH symptoms among young, middle, and older adults with PAH. A cross sectional design was utilized. For all the age groups, shortness of breath (SOB) on exertion and fatigue were the two most prevalent symptoms. SOB on exertion had the highest symptom severity scores followed by fatigue for all groups. Symptom severity was significantly different among the groups for palpitations, abdominal swelling and nausea. For components of HRQOL, physical functioning worsened with age. All groups had diminished general health, role physical and vitality levels. There are some differences in symptom prevalence, symptom severity and HRQOL among young, middle and older adults. Awareness of these differences is important for healthcare providers to know and assess overtime. Palliative care should be an integral part of caring for patients with PAH.

Development and initial psychometric properties of the Pulmonary Arterial Hypertension Symptom Scale (PAHSS)

AIMS The aim of this study is to report the development and psychometric properties of the Pulmonary Arterial Hypertension Symptom Scale (PAHSS). BACKGROUND Patients with pulmonary arterial hypertension (PAH) experience multiple symptoms such as dyspnea, fatigue and chest pain, yet there is no comprehensive, validated symptom assessment tool to date. METHODS This study used a cross sectional design. Participants completed: socio-demographic and medical data form, the PAHSS, the Medical Outcomes Study Short Form-36 and the Profile of Mood States short form. RESULTS The PAHSS contains 17 symptoms measured on a 0 to 10 scale. Principal components analysis demonstrated a three factor solution for the PAHSS: pulmonary, diffuse, and cardiac. Coefficient alphas were good. Statistically significant Pearson coefficients were found between the PAHSS and the Medical Outcomes Study Short Form-36 and the Profile of Mood States short form. CONCLUSION Findings show that the PAHSS is a promising scale to assess symptom severity.

Cyber support: describing concerns of caregivers of people with pulmonary hypertension.

The purpose of this study was to gain an understanding of how caregivers of people with pulmonary hypertension are using an online discussion board. The chronicity and complex medical needs of people with pulmonary hypertension warrant a holistic nursing approach combining the patient and caregiver concerns to adequately address their needs. A qualitative descriptive approach was utilized. A convenience sample over an 18-month period of those caregivers who posted Internet messages to the Pulmonary Hypertension Discussion Board was included. Sociodemographics collected were age and gender of the person with pulmonary hypertension and the relationship of the caregiver to the person with pulmonary hypertension. Clinical variables collected were medications and oxygen use and years since diagnosis. Thematic analysis was used to identify themes. A total of 98 caregivers posted to the discussion board during the 18-month period; 46% of those posting were mothers of children with pulmonary hypertension. Four themes emerged: fear and frustration, questions and concerns, someone to listen to, and moving on with life. These themes characterize how caregivers of people with pulmonary hypertension were using the discussion board. Caregivers of people with pulmonary hypertension may need more information and support from their healthcare providers to adequately care for those with pulmonary hypertension.