title: Psychosocial Burdens of Pulmonary Arterial Hypertension: A Discussion Paper.
abstract: Pulmonary arterial hypertension is an uncommon and devastating chronic illness with no known cure. Little is known about the disease, and even less about the psychosocial burdens. While it is important to create awareness about the physical aspects of the disease, it is equally important to create awareness about the psychosocial burdens patients and their families face. We reviewed the literature to better understand these psychosocial burdens, which include impact from physical limitations, emotional strains, financial burdens, social isolation, lack of intimacy in relationships, and an overall lack of information. The findings can be used to assist health care providers to understand the psychosocial challenges that are being experienced by patients and families in order to better provide supportive care. The creation of a standardized tool to assess the psychosocial burdens at each clinic visit can benefit health care providers by addressing challenges faced and facilitate subsequent referral to appropriate specialists.
authors.forename: Carolyn
authors.initials: C
authors.lastname: Doyle-Cox
authors.forename: Carolynne
authors.initials: C
authors.lastname: Brousseau
authors.forename: Heather
authors.initials: H
authors.lastname: Tulloch
authors.forename: Lisa M
authors.initials: LM
authors.lastname: Mielniczuk
authors.forename: Ross A
authors.initials: RA
authors.lastname: Davies
authors.forename: Heather
authors.initials: H
authors.lastname: Sherrard
authors.forename: Lorraine
authors.initials: L
authors.lastname: Clark
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D030881:Disclosure; D005190:Family / Q000523:psychology; D006301:Health Services Needs and Demand; D006801:Humans; D006976:Hypertension, Pulmonary / Q000451:nursing / Q000523:psychology*; D007182:Income / Q000706:statistics & numerical data; D012725:Sexual Behavior; D012934:Social Isolation / Q000523:psychology; D012944:Social Support; D014195:Travel / Q000191:economics