Patients', relatives', and practitioners' views of pulmonary arterial hypertension: A qualitative study.

INTRODUCTION: To study practitioners', patients' with PAH, and relatives' views regarding pulmonary arterial hypertension (PAH) and identify potential improvements in medical care strategies. METHODS: A qualitative study based on semi-structured interviews involving 16 patients, 4 relatives, and 9 practitioners. RESULTS: Patients with PAH, their relatives, and physicians who treat persons with PAH had divergent perspectives on PAH. The discrepancies identified concerned their perceptions of the illness and its impact on patients' with PAH daily lives. Patients with PAH had a broader view, including social, identity, financial, and functional dimensions of PAH's impact on their lives, whereas practitioners were more focused on functional aspects. The study also pointed out divergent approaches among physicians to assessing patients' New York Heart Association functional class. The expectations of patients with PAH, relatives, and physicians also differed. Patients with PAH expected improvement in PAH diagnosis and better coordination between primary care physicians and PAH medical centers. They also valued reducing side effects, less restrictive medications, and greater consideration of their views in the medical decision making process. Physicians' expectations focused more on identifying and validating therapeutic strategies. CONCLUSION: Our results suggest several potential improvements in patient management, especially in order to better tailor treatment to patients' needs and to achieve a more uniform approach to the PAH functional impact assessment process. The findings may also be useful in enhancing therapeutic education for patients and their relatives, and in enabling practitioners to better interpret dyspnea in patients with PAH. Finally, this qualitative database will help in developing patient-reported outcome measures with better content validity. It lays the groundwork for developing new instruments to investigate the impact of PAH on patients' daily lives in terms of symptom assessment and functional impact.

Management of pain induced by exercise and mobilization during physical therapy programs: views of patients and care providers.

BACKGROUND: The expectations of patients for managing pain induced by exercise and mobilization (PIEM) have seldom been investigated. We identified the views of patients and care providers regarding pain management induced by exercise and mobilization during physical therapy programs. METHODS: We performed a qualitative study based on semi-structured interviews with a stratified sample of 12 patients (7 women) and 14 care providers (6 women): 4 general practitioners [GPs], 1 rheumatologist, 1 physical medicine physician, 1 geriatrician, 2 orthopedic surgeons, and 5 physical therapists. RESULTS: Patients and care providers have differing views on PIEM in the overall management of the state of disease. Patients' descriptions of PIEM were polymorphic, and they experienced it as decreased health-related quality of life. The impact of PIEM was complex, and patient views were sometimes ambivalent, ranging from denial of symptoms to discontinuation of therapy. Care providers agreed that PIEM is generally not integrated in management strategies. Care providers more often emphasized the positive and less often the negative dimensions of PIEM than did patients. However, the consequences of PIEM cited included worsened patient clinical condition, fears about physical therapy, rejection of the physical therapist and refusal of care. PIEM follow-up is not optimal and is characterized by poor transmission of information. Patients expected education on how better to prevent stress and anxiety generated by pain, education on mobilization, and adaptations of physical therapy programs according to pain intensity. CONCLUSION: PIEM management could be optimized by alerting care providers to the situation, improving communication among care providers, and providing education to patients and care providers.

Patients' and practitioners' views of knee osteoarthritis and its management: a qualitative interview study.

PURPOSE: To identify the views of patients and care providers regarding the management of knee osteoarthritis (OA) and to reveal potential obstacles to improving health care strategies. METHODS: We performed a qualitative study based on semi-structured interviews of a stratified sample of 81 patients (59 women) and 29 practitioners (8 women, 11 general practitioners [GPs], 6 rheumatologists, 4 orthopedic surgeons, and 8 [4 GPs] delivering alternative medicine). RESULTS: Two main domains of patient views were identified: one about the patient-physician relationship and the other about treatments. Patients feel that their complaints are not taken seriously. They also feel that practitioners act as technicians, paying more attention to the knee than to the individual, and they consider that not enough time is spent on information and counseling. They have negative perceptions of drugs and a feeling of medical uncertainty about OA, which leads to less compliance with treatment and a switch to alternative medicine. Patients believe that knee OA is an inevitable illness associated with age, that not much can be done to modify its evolution, that treatments are of little help, and that practitioners have not much to propose. They express unrealistic fears about the impact of knee OA on daily and social life. Practitioners' views differ from those of patients. Physicians emphasize the difficulty in elaborating treatment strategies and the need for a tool to help in treatment choice. CONCLUSIONS: This qualitative study suggests several ways to improve the patient-practitioner relationship and the efficacy of treatment strategies, by increasing their acceptability and compliance. Providing adapted and formalized information to patients, adopting more global assessment and therapeutic approaches, and dealing more accurately with patients' paradoxal representation of drug therapy are main factors of improvement that should be addressed.