title: The Population Burden of Chronic Symptoms that Substantially Predate the Diagnosis of a Life-Limiting Illness.
abstract: Many people in our communities live with symptoms for years or decades, something of relevance to hospice/palliative care clinicians and researchers. The proportion of people in the community at large who have a chronic symptom is likely to approximate the proportion of people referred to hospice/palliative care services with that same chronic symptom that pre-dates their life-limiting illness. Such patients may have different responsiveness to, and expectations from, symptomatic therapies, thus requiring more advanced approaches to symptom control. For researchers evaluating the impact of hospice/palliative care services, failing to account for people with long-term refractory symptoms pre-dating their life-limiting illness may systematically underestimate services' benefits. Observational symptom prevalence studies reported in hospice/palliative care to date have not accounted for people with long-term refractory symptoms, potentially systematically overestimating symptoms attributed to life-limiting illnesses. Cross-sectional community prevalence rates of key chronic refractory symptoms largely unrelated to their life-limiting illness reflect the likely prevalence on referral to hospice/palliative care: fatigue (up to 35%); pain (12%-31%); pain with neuropathic characteristics (9%); constipation (2%-29%); dyspnea (4%-9%); cognitive impairment (>10% of people >65 years old; >30% of people >85 years old); anxiety (4%); and depression (lifetime incidence 2%-15%; one year prevalence 3%). Prospective research is needed to establish (1) the prevalence and severity of chronic symptoms that pre-date the diagnosis of a life-limiting illness in people referred to hospice/palliative care services, comparing this to whole-of-population estimates; and (2) whether this group is disproportionately represented in people with refractory symptoms.
authors: 1Discipline, Palliative, and Supportive Services, Flinders University, Bedford Park, South Australia.|2Southern Adelaide Palliative Services, Repatriation General Hospital, Daw Park, South Australia.
authors: David C
authors: DC
authors: Currow
authors: 3Palliative Care Department, Calvary Mater Health Care, Waratah, New South Wales, Australia.|4University of Newcastle, Callaghan, New South Wales, Australia.
authors: Katherine
authors: K
authors: Clark
authors: 5Department of Medical Oncology, Duke University Medical Center, Durham, North Carolina.
authors: Arif
authors: A
authors: Kamal
authors: 1Discipline, Palliative, and Supportive Services, Flinders University, Bedford Park, South Australia.
authors: Aileen
authors: A
authors: Collier
authors: 1Discipline, Palliative, and Supportive Services, Flinders University, Bedford Park, South Australia.|6HammondCare, Braeside Hospital, Braeside, New South Wales, Australia.
authors: Meera R
authors: MR
authors: Agar
authors: 7HammondCare, Greenwich Hospital, Greenwich, New South Wales, Australia.|8School of Medicine, University of Sydney, Camperdown, Sydney, New South Wales, Australia.
authors: Melanie R
authors: MR
authors: Lovell
authors: 8School of Medicine, University of Sydney, Camperdown, Sydney, New South Wales, Australia.|9University of Technology, Ultimo, Sydney, New South Wales, Australia.
authors: Jane L
authors: JL
authors: Phillips
authors: 10The San Francisco VA Medical Center, San Francisco, California.|11Department of Medicine, University of California, San Francisco, California.
authors: Christine
authors: C
authors: Ritchie
mesh_terms: D000367:Age Factors; D002908:Chronic Disease / Q000453:epidemiology*; D006801:Humans; D010166:Palliative Care; D015995:Prevalence; D012107:Research Design; D012307:Risk Factors; D019452:Terminally Ill