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Patients' experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey.

ABSTRACT: We developed a new single point of access to integrated palliative care, respiratory medicine and physiotherapy: the breathlessness support service for patients with advanced disease and refractory breathlessness. This study aimed to describe patients' experiences of the service and identify the aspects valued.We attempted to survey all patients who had attended and completed the 6-week breathlessness support service intervention by sending them a postal questionnaire to self-complete covering experience, composition, effectiveness of the BSS and about participation in research. Data were analysed using descriptive statistics and thematic analysis of free text comments.Of the 70 postal questionnaires sent out, 25 (36%) returned. A total of 21 (84% (95% confidence interval: 69%-98%)) responding patients reported that they definitely found the breathlessness support service helpful and 13 (52% (95% confidence interval: 32%-72%)) rated the breathlessness support service as excellent. A total of 21 (84% (95% confidence interval: 69%-98%)) patients reported that the breathlessness support service helped with their management of their breathlessness along with additional symptoms and activities (e.g. mood and mobility). Four key themes were identified: (1) personalised care, (2) caring nature of the staff, (3) importance of patient education to empower patients and (4) effectiveness of context-specific breathlessness interventions. These were specific aspects that patients valued.Patients' satisfaction with the breathlessness support service was high, and identified as important to this was a combination of personalised care, nature of staff, education and empowerment, and use of specific interventions. These components would be important in any future breathlessness service.

SUBMITTER: Reilly CC

PROVIDER: S-EPMC4778380 | biostudies-literature | 2016 Mar

REPOSITORIES: biostudies-literature

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Patients' experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey.

Reilly Charles C CC Bausewein Claudia C Pannell Caty C Moxham John J Jolley Caroline J CJ Higginson Irene J IJ

Palliative medicine 20150826 3

<h4>Background</h4>We developed a new single point of access to integrated palliative care, respiratory medicine and physiotherapy: the breathlessness support service for patients with advanced disease and refractory breathlessness. This study aimed to describe patients' experiences of the service and identify the aspects valued.<h4>Design</h4>We attempted to survey all patients who had attended and completed the 6-week breathlessness support service intervention by sending them a postal questio ...[more]

PMID: 26311570

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Project description:BackgroundThere have been no large-scale studies to date of patients' experiences with electronic consultation (eConsult) between primary and specialty care.ObjectiveCompare experiences with eConsult and referral for in-person specialist consultation.DesignOnline survey 2-6 weeks following eConsult or referral at 9 US academic medical centers.ParticipantsAdult patients with no more than one eConsult or referral order from a primary care provider (PCP) in the prior month. Over 9 months, 29,291 email invitations were sent (88% referral; 12% eConsult).Main measuresTrust in and satisfaction with PCP; consult type awareness; agreement with decision to seek specialist input; timeliness of care; mode of PCP-patient eConsult communication; satisfaction with specialist's recommendations; future preference for eConsult or referral.Key resultsA 27.6% response rate yielded 8087 respondents (88.4% referral; 11.6% eConsult). Many did not know that their PCP had placed a referral (32.8% unaware) or eConsult (52.9%), and eConsult awareness was significantly higher among patients reporting better health (OR 1.62, 95% CI 1.18-2.23). Most (81.4% eConsult; 82.0% referral) were satisfied with the specialist's recommendations. Those who had a good primary care experience were more likely to be satisfied (eConsult: OR 10.63, 95% CI 2.95-38.32; referral: OR 2.87, 95% CI 1.86-4.44). For a similar problem in the future, 78% of eConsult and 32% percent of referral patients preferred eConsult.ConclusionsThis multisite study demonstrates that many patients find virtual consultation to be an acceptable strategy for the management of their medical condition and that trust and confidence in one's PCP are crucial ingredients for a satisfying eConsult experience. The lack of awareness of eConsult among many patients who were beneficiaries of the service warrants an increased effort to include patients in eConsult decision-making and communication. Further research is needed to assess eConsult acceptability and satisfaction in more diverse patient populations.

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Patients' experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey.

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Patients' experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey.

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