Ivarsson Bodil, Rådegran Göran, Hesselstrand Roger, Kjellström Barbro
Division of Cardiothoracic Surgery, Department of Clinical Sciences Lund, Lund University and Skåne University Hospital, Lund, Sweden.
Medicine Services University Trust, Region Skåne, Lund, Sweden.
SAGE Open Med. 2018 Jan 4;6:2050312117749159. doi: 10.1177/2050312117749159. eCollection 2018.
Pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension are severe diseases with complicated treatment that need care at specialist clinics. The aim was to investigate changes in the patients' perceptions on coping, social support and received information when attending a newly started nurse-coordinated pulmonary arterial hypertension-outpatient clinic.
The present study was a descriptive, questionnaire-based cohort study including 42 adult patients. To evaluate coping, the Pearlin Mastery Scale was used. Social support, information and health-related quality of life were measured using Social Network and Support Scale, QLQ-INFO25 and the EQ-5D.
Attending the pulmonary arterial hypertension-outpatient clinic increased coping ability (Mastery Scale) significantly (baseline 16.0 ± 3.3 points vs 2-year follow-up 19.6 ± 5.2 points, < 0.001) while there was no difference in social network and support or in perception of received information after. Patients who improved their coping ability (67%) were younger, had better exercise capacity, experienced better health-related quality of life and were more satisfied with received information about treatment and medical tests than those who reduced the coping ability. There was no difference in gender, diagnosis, time since diagnose, pulmonary arterial hypertension-specific treatment, education level or civil status between the two groups.
This study suggests that the pulmonary arterial hypertension-team, in partnership with the patient, can support patients to take control of their disease and increase their health-related quality of life.
肺动脉高压和慢性血栓栓塞性肺动脉高压是治疗复杂的严重疾病，需要在专科诊所接受护理。本研究旨在调查患者在参加新设立的由护士协调的肺动脉高压门诊时，其应对方式、社会支持和所获信息方面的变化。
本研究是一项基于问卷的描述性队列研究，纳入了42例成年患者。使用皮尔林掌控量表评估应对方式。采用社会网络与支持量表、QLQ - INFO25和EQ - 5D测量社会支持、信息及健康相关生活质量。
参加肺动脉高压门诊显著提高了应对能力（掌控量表）（基线16.0±3.3分 vs 2年随访19.6±5.2分，<0.001），而社会网络与支持或所获信息的认知方面并无差异。应对能力提高的患者（67%）比应对能力降低的患者更年轻，运动能力更好，健康相关生活质量更高，对所获治疗和医学检查信息更满意。两组在性别、诊断、确诊时间、肺动脉高压特异性治疗、教育程度或婚姻状况方面无差异。
本研究表明，肺动脉高压团队与患者合作，可以支持患者控制疾病并提高其健康相关生活质量。
