title: "An evil heritage": interview study of pain and autosomal dominant polycystic kidney disease.
abstract: Pain is a common problem for patients with autosomal dominant polycystic kidney disease (ADPKD). Knowledge about patients' experience of the pain, pain management, and pain's effect on everyday life is, however, limited. In clinical practice there is a need to improve the care of these patients. To be able to do so, information about how the disease and its pain affect the patients is required. This study explores patients' experience of living with ADPKD and its pain. The findings are based on in-depth semistructured interviews. The participants were 22 patients with ADPKD. The data were transcribed and analyzed by using phenomenology. Findings showed that the patients experienced limitations in their everyday life due to inexplicable and unpredictable pain and fatigue. Also, pain management was experienced as suboptimal and pain was seldom discussed at health care appointments. Emotional distress concerning the hereditary nature of the disease was also present. Health care providers need to increase their focus on pain and pain management to reduce the disease's intrusion in patients' everyday life. Also, patients and people in the patients' immediate surroundings need to be given information and education about the disease and its pain as well as the opportunity to talk about their worries concerning heredity. By implementing the findings of the present study when meeting a patient with ADPKD, improved patient satisfaction and health-related quality of life could be accomplished.
authors.affiliation: Division of Nephrology, Department of Medicine, Karolinska Institutet, Department of Physical Therapy, Karolinska University Hospital, Sweden. susanne.heiwe@karolinska.se
authors.forename: Susanne
authors.initials: S
authors.lastname: Heiwe
authors.forename: Monica
authors.initials: M
authors.lastname: Bjuke
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D003142:Communication; D017281:Cost of Illness; D005221:Fatigue / Q000209:etiology / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000209:etiology / Q000517:prevention & control / Q000523:psychology*; D010353:Patient Education as Topic; D016891:Polycystic Kidney, Autosomal Dominant / Q000150:complications* / Q000235:genetics / Q000628:therapy; D036301:Qualitative Research; D013315:Stress, Psychological / Q000209:etiology / Q000523:psychology; D011795:Surveys and Questionnaires; D013548:Sweden; D035501:Uncertainty