'A balancing act'. Living with severe chronic obstructive pulmonary disease in Southern New Zealand: a qualitative study.

INTRODUCTION Chronic obstructive pulmonary disease (COPD) is a common chronic condition managed in primary care. AIM To understand how patients with severe COPD living in the Southern Health Region (Otago and Southland) experience and cope with the condition. METHODS Semi-structured interviews were undertaken with 23 patients with severe COPD (defined using the 2013 GOLD classification). A thematic analysis was conducted. RESULTS Patients' accounts of living with severe COPD revealed four themes: loss, adaptation, isolation and social support. All participants discussed their sense of loss in coming to terms with having COPD and the ongoing restrictions or changes that were associated with breathlessness and fatigue. These losses required adaptation in daily living. Some patients struggled to adjust to new limitations and needed to rely on others for support. Others found ways to adapt their surroundings or ways of doing things while trying to maintain the same activities. Isolation was described in two ways - direct (no longer being able to easily socialize because activities often caused breathlessness) and indirect (the feeling of being isolated from others because they do not understand what it is like to live with COPD). Social support, including support provided by group-based pulmonary rehabilitation, helped to address the problems of social isolation. DISCUSSION Living with severe COPD is a 'balancing act' between insecurity (loss and isolation) and resilience (adaptation and social support). Health-care providers need to be proactive in identifying and managing patients' unmet health needs and promote activities that reduce social isolation.

Health Care Utilisation and Health Needs of People with Severe COPD in the Southern Region of New Zealand: A Retrospective Case Note Review.

We examined health care utilisation and needs of people with severe COPD in the low-population-density setting of the Southern Region of New Zealand (NZ). We undertook a retrospective case note review of patients with COPD coded as having an emergency department attendance and/or admission with at least one acute exacerbation during 2015 to hospitals in the Southern Region of NZ. Data were collected and analysed from 340 case notes pertaining to: demographics, hospital admissions, outpatient contacts, pulmonary rehabilitation, advance care planning and comorbidities. Geometric mean (95%CI) length of stay for hospital admissions in urban and rural hospitals was 3.0 (2.7-3.4) and 4.0 (2.9-5.4) days respectively. More patients were from areas of higher deprivation but median hospital length of stay for patients from the least deprived areas was 2.0 days longer than others (p = 0.04). There was a median of 4 (range 0-16) comorbidities and 10 medications (range 0-25) per person. Of 169 cases where data was available, 26 (15%) were offered, 17 (10%) declined, and 5 (3%) completed, pulmonary rehabilitation at or in the year prior to the index admission. Patients were less likely to be offered pulmonary rehabilitation if they lived >20km away from the hospital where it took place (odds ratio of 0.12 for those living further away [95%CI 0.02-0.93, p = 0.04]). There were deficits in care: provision and uptake of non-pharmacological interventions was suboptimal and unevenly distributed across the region. Further research is needed to develop and evaluate strategies for delivering non-pharmacological interventions in this setting.

Improving access to health care for people with severe chronic obstructive pulmonary disease (COPD) in Southern New Zealand: qualitative study of the views of health professional stakeholders and patients.

OBJECTIVES: Chronic obstructive pulmonary disease (COPD) is a common chronic disease with significant morbidity and mortality, particularly for Maori, which places a large burden on the New Zealand (NZ) health system. We undertook a qualitative study as part of a mixed-methods implementation research project which aimed to determine the barriers and enablers to the provision of accessible high-quality COPD care. SETTING: Southern Health Region of NZ (Otago and Southland). PARTICIPANTS: Thirteen health professional stakeholders and 23 patients with severe COPD (including one Maori and one Pasifika participant). METHODS: Semistructured interviews were undertaken. A thematic analysis using the Levesque conceptual framework for access to healthcare was conducted. RESULTS: Health professional stakeholders identified barriers to providing access to health services, in particular: availability (inadequate staffing and resourcing of specialist services and limited geographical availability of pulmonary rehabilitation), affordability (both of regular medication, medication needed for an exacerbation of COPD and the copayment charge for seeing a general practitioner) and appropriateness (a shared model of care across primary and secondary care was needed to facilitate better delivery of key interventions such as pulmonary rehabilitation and advance care planning (ACP). Maori stakeholders highlighted the importance of communication and relationships and the role of whanau (extended family) for support. Patients' accounts showed variable ability to access services through having a limited understanding of what COPD is, a limited knowledge of services they could access, being unable to attend pulmonary rehabilitation (due to comorbidities) and direct (medication and copayment charges) and indirect (transport) costs. CONCLUSIONS: People with severe COPD experience multilevel barriers to accessing healthcare in the NZ health system along the pathway of care from diagnosis to ACP. These need to be addressed by local health services if this group of patients are to receive high-quality care.