Pain and functional limitations in patients with severe haemophilia

Abstract

Patients with severe haemophilia often experience pain caused by haemophilic arthropathy, and it is known that pain acts as a predictor of disability. The role of pain in functional limitations in these patients, however, has not been systematically investigated. The aim of this study was to describe pain as experienced by patients with haemophilia and to address the role of pain in subsequent functional limitations. Seventy-eight adult patients (18-70 years) with severe haemophilia completed one questionnaire on pain and one on self-perceived functional abilities. Two-thirds of the patients suffered from more than one painful joint, the ankle being mentioned most frequently (n=43). Analgesics were used by 36% of the patients indicating having pain. Six of 10 most frequently mentioned pain descriptors were of evaluative nature. Evaluative qualities of pain were associated with pain intensity, which in turn was associated with the impact of pain on daily life. Pain outcomes, after adjusting for age and treatment modality, explained 3-22% of the variance in self-perceived functional abilities. Data on radiological joint damage (Pettersson scores) were retrieved for a subgroup of 28 younger patients on prophylaxis and no significant correlations with pain parameters were found. Over two-thirds of the patients with severe haemophilia had one or more painful joints. Pain plays a small, but significant role in functional limitations. In the identified subgroup, arthropathy, as measured by the Pettersson score, seemed to have no role in pain experience. Promoting analgesic use might decrease the impact of pain on functional limitations.

Comparación de la conducta de enfermedad en pacientes colombianos con hemofilia A, en una muestra con dolor crónico y sin dolor crónico

“…Van Genderen y colaboradores refieren en un artículo publicado en el 2006 que el impacto de la sintomatología del dolor en los pacientes con hemofilia está explicado a través del Proceso de Invalidez propuesto por Nagi y que indica que la patología lleva a unos impedimentos en la realización de actividades cotidianas, lo que a su vez se asume como una limitación funcional que termina conllevando a una incapacidad sentida por parte del paciente (16).…”

“…La intensidad del dolor es el principal factor influyente en el nivel de calidad de vida física y mental de los pacientes con hemofilia, por lo que en pacientes con hemofilia severa existe mayor afectación ya que suelen presentar más episodios de dolor recurrente en comparación a pacientes con hemofilia leve o moderada (15). Cuando el dolor se combina con una mayor edad parece favorecer una mayor limitación funcional del paciente con hemofilia (16); ante esto, en una investigación realizada en Europa (13), estudiaron pacientes con hemofilia suscritos a 22 centros de salud, en los que identificaron que 5103 eran adultos de los cuales 2224 tenían hemofilia severa y 840 con dolor crónico; mientras que 1687 eran menores de 18 años de edad de los que 792 tenían hemofilia severa y 76 presentaban dolor crónico.…”

“…Por otro lado, en un estudio sobre el dolor y su limitación funcional en pacientes con hemofilia severa realizado en Europa, encontraron que el 81% de los pacientes con hemofilia severa expresaba experiencia de dolor, y que la localización corporal en la que hay mayor dolor para los pacientes con hemofilia es el tobillo (33%), en segundo lugar el codo (20%), seguida de la rodilla (18%) (16). Por su parte, en Colombia, la Fundación Hospital de la Misericordia identificó que la distribución por frecuencia de hermartrosis en pacientes con hemofilia era del 70% al 80%, del 10% al 20% en músculos y tejidos blancos, del 10% al 5% otras hemorragias importantes y del 5% en el sistema nervioso (9).…”

Pain and pain management in haemophilia

“…Pain in one or more joints is a daily reality for as many as two-thirds of patients with severe haemophilia [5]. Pain is therefore a critical aspect of haemophilia [3,6] and adds to the burden of the disease.…”

A Model for Pain Self-Management of Patients with Haemophilia: Peer Education

“…Pharmacologic therapies may be part of a steppedcare progression from topical ana esthetics to mild analgesics to opioids. But another individuals who suffer from chronic pain may be reluctant to use analgesics.In one study, only 36% of haemophilia patients with pain were taking analgesics [13], and more patients expressed concerns about becoming dependent on and drug-related liver damage [14]. Non-pharmacologic therapy for pain management in haemophilia patients has been a mainstay of conservative treatment, include acupuncture, exercise, components of RICE, heat or cold treatments, hydrotherapy, massage and physical therapy.…”