title: Pain Intensity and Misconceptions Among Hospice Patients With Cancer and Their Caregivers: Status After 2 Decades.
abstract: There is little evidence about barriers to pain management or their relationships with pain outcomes of hospice patients with cancer. The purpose of the study was to determine the barriers reported by hospice patients with cancer and their caregivers and the relationships with demographic characteristics and the patients' pain. In this cross-sectional study, we used selected baseline data from an ongoing randomized clinical trial of patient and lay caregiver dyads receiving home-level hospice care. Participants used an Internet-enabled tablet to complete the valid, reliable measures of pain intensity, pain management barriers (Barriers Questionnaire 13 items [BQ-13]), and demographic characteristics. The responses indicate that the 2 areas of highest concern (mean scores >3) to both patients and caregivers were "pain means disease progression" and "constipation." Additionally, 3 other areas of highest concern (mean scores >3) to caregivers were "addiction" pain medicine causing "one to do embarrassing things" and "confusion." The mean BQ-13 scores ranged from 0.2 to 4.9 and averaged 2.6 ± 0.9 for the patients and ranged from 0.5 to 4.7 and averaged 2.7 ± 0.9 for the caregivers. Mean barrier scores remain high and were not different between patients and their caregivers or significantly related to the patients' pain intensity. However, there were differences in race, ethnic, and hospice setting in the barrier scores. Patients with Hispanic heritage reported higher barrier scores than non-Hispanic patients. Together, these findings not only support prior research findings but also contribute new insights about pain intensity and pain barriers that are relevant to hospices serving minorities with cancer.
authors.affiliation: 1 Department of Biobehavioral Nursing Science, College of Nursing, University of Florida, Gainesville, FL, USA.|2 Department of Biobehavioral Health Science, College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: Diana J
authors.initials: DJ
authors.lastname: Wilkie
authors.affiliation: 1 Department of Biobehavioral Nursing Science, College of Nursing, University of Florida, Gainesville, FL, USA.|2 Department of Biobehavioral Health Science, College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: M O
authors.initials: MO
authors.lastname: Ezenwa
authors.affiliation: 1 Department of Biobehavioral Nursing Science, College of Nursing, University of Florida, Gainesville, FL, USA.|2 Department of Biobehavioral Health Science, College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: Y
authors.initials: Y
authors.lastname: Yao
authors.affiliation: 3 Rainbow Hospice and Palliative Care, Mount Prospect, IL, USA.
authors.forename: A
authors.initials: A
authors.lastname: Gill
authors.affiliation: 4 Horizon Hospice & Palliative Care, Chicago, IL, USA.
authors.forename: T
authors.initials: T
authors.lastname: Hipp
authors.affiliation: 3 Rainbow Hospice and Palliative Care, Mount Prospect, IL, USA.
authors.forename: R
authors.initials: R
authors.lastname: Shea
authors.affiliation: 4 Horizon Hospice & Palliative Care, Chicago, IL, USA.
authors.forename: J
authors.initials: J
authors.lastname: Miller
authors.affiliation: 2 Department of Biobehavioral Health Science, College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: J
authors.initials: J
authors.lastname: Carrasco
authors.affiliation: 2 Department of Biobehavioral Health Science, College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: D
authors.initials: D
authors.lastname: Shuey
authors.affiliation: 2 Department of Biobehavioral Health Science, College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: Z
authors.initials: Z
authors.lastname: Zhao
authors.affiliation: 2 Department of Biobehavioral Health Science, College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: V
authors.initials: V
authors.lastname: Angulo
authors.affiliation: 2 Department of Biobehavioral Health Science, College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: M L
authors.initials: ML
authors.lastname: Suarez
authors.affiliation: 3 Rainbow Hospice and Palliative Care, Mount Prospect, IL, USA.
authors.forename: T
authors.initials: T
authors.lastname: McCurry
authors.affiliation: 4 Horizon Hospice & Palliative Care, Chicago, IL, USA.
authors.forename: J
authors.initials: J
authors.lastname: Martin
authors.affiliation: 5 Department of Medicine, College of Medicine, University of Illinois at Chicago, Chicago, IL, USA.|6 Department of Biopharmaceutical Sciences, College of Pharmacy, University of Illinois at Chicago, Chicago, IL, USA.|7 Jesse Brown VA Medical Center, Chicago, IL, USA.
authors.forename: R E
authors.initials: RE
authors.lastname: Molokie
authors.affiliation: 6 Department of Biopharmaceutical Sciences, College of Pharmacy, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: Z W
authors.initials: ZW
authors.lastname: Wang
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000072716:Cancer Pain / Q000188:drug therapy* / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D003248:Constipation / Q000139:chemically induced; D003430:Cross-Sectional Studies; D018450:Disease Progression; D005260:Female; D006738:Hospices / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009293:Opioid-Related Disorders / Q000523:psychology; D059408:Pain Management / Q000009:adverse effects / Q000706:statistics & numerical data*; D010147:Pain Measurement; D012959:Socioeconomic Factors; D055815:Young Adult
keywords: cancer; caregiver; dyads; hospice; pain barriers; pain intensity; patient