ABSTRACT
OBJECTIVES: To investigate the patient's experience of the trajectory to receiving a diagnosis of pulmonary arterial hypertension (PAH) and inform the provision of care for this patient group. DESIGN: Qualitative study using in-depth one-to-one interviews and pictorial representations. Data were analysed using thematic analysis. SETTING: Participants were interviewed in their own homes across England. PARTICIPANTS: 30 patients with a diagnosis of pulmonary hypertension (18 participants were women, mean age 56 and range 26-80 years and time since diagnosis ranged from a few months to more than 12 years) participated. RESULTS: All participants, regardless of the time since diagnosis, vividly described the process from manifestation of symptoms to receiving a confirmed diagnosis. The authors present data using three major themes: (i) making sense of symptoms, (ii) process of elimination and (iii) being diagnosed with PAH. Making sense of symptoms represented an early period of perseverance-people tried to carry-on as usual despite 'unexplained breathlessness'. As time progressed, this period was punctuated by critical events that triggered seeking medical advice. Once medical contact had been made, patients described a period of 'elimination' and convoluted contact with the medical profession. Dyspnoea misdiagnosis was a key factor that delayed the PAH diagnosis. Diagnosis disclosure by some medical professionals was also viewed as lacking empathy. More positive experiences were relayed when the medical team disclosing the diagnosis acknowledged previous limitations. CONCLUSIONS: A lack of awareness of this illness from both the sufferer themselves and the medical profession emerged as a central theme and led to prolonged periods of being misdiagnosed. The application of a diagnostic pathway for unexplained dyspnoea that alerts practitioners to rare conditions could expedite the process of correct diagnosis.
ABSTRACT
BACKGROUND: Dyspnea is a prominent symptom in asthma. The Dyspnea-12 (D-12), an instrument that quantifies breathlessness using 12 descriptors that tap the physical and affective aspects, has shown promise for the measurement of dyspnea in cardiorespiratory disease. OBJECTIVE: We report the results of a study designed to test the validity and reliability of the D-12 in a population of patients with asthma. METHODS: This cross-sectional study included 102 patients with asthma. Subjects completed the D-12, Hospital Anxiety and Depression scale, St. George's Respiratory Questionnaire (SGRQ), and Medical Research Council scale. Confirmatory factor analysis confirmed the two-component structure of the D-12 (i.e., seven items that tap the physical aspects of breathlessness and five items that tap the affective aspects). RESULTS: The D-12 subscales had excellent internal reliability (Cronbach's alpha for the "physical" score was 0.94 and the affective score was 0.95). The D-12 physical component was more strongly correlated with SGRQ Symptoms (r = 0.648), SGRQ Activities (r = 0.635) and Medical Research Council grade (r = 0.636), while the affective component was more strongly correlated with SGRQ Impacts (r = 0.765) and Hospital Anxiety and Depression scale scores (anxiety r = 0.641 and depression r = 0.602). CONCLUSION: This study supports validity of the D-12 for use in the assessment of dyspnea of patients with asthma. It assesses one of the most pertinent symptoms of asthma from two viewpoints-physical and affective.
