788 resultados para Patient-reported Pain
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BACKGROUND: Mechanical pain sensitivity is assessed in every patient with pain, either by palpation or by quantitative pressure algometry. Despite widespread use, no studies have formally addressed the usefulness of this practice for the identification of the source of pain. We tested the hypothesis that assessing mechanical pain sensitivity distinguishes damaged from healthy cervical zygapophysial (facet) joints. METHODS: Thirty-three patients with chronic unilateral neck pain were studied. Pressure pain thresholds (PPTs) were assessed bilaterally at all cervical zygapophysial joints. The diagnosis of zygapophysial joint pain was made by selective nerve blocks. Primary analysis was the comparison of the PPT between symptomatic and contralateral asymptomatic joints. The secondary end points were as follows: differences in PPT between affected and asymptomatic joints of the same side of patients with zygapophysial joint pain; differences in PPT at the painful side between patients with and without zygapophysial joint pain; and sensitivity and specificity of PPT for 2 different cutoffs (difference in PPT between affected and contralateral side by 1 and 30 kPa, meaning that the test was considered positive if the difference in PPT between painful and contralateral side was negative by at least 1 and 30 kPa, respectively). The PPT of patients was also compared with the PPT of 12 pain-free subjects. RESULTS: Zygapophysial joint pain was present in 14 patients. In these cases, the difference in mean PPT between affected and contralateral side (primary analysis) was −6.2 kPa (95% confidence interval: −19.5 to 7.2, P = 0.34). In addition, the secondary analyses yielded no statistically significant differences. For the cutoff of 1 kPa, sensitivity and specificity of PPT were 67% and 16%, respectively, resulting in a positive likelihood ratio of 0.79 and a diagnostic confidence of 38%. When the cutoff of 30 kPa was considered, the sensitivity decreased to only 13%, whereas the specificity increased to 95%, resulting in a positive likelihood ratio of 2.53 and a diagnostic confidence of 67%. The PPT was significantly lower in patients than in pain-free subjects (P < 0.001). CONCLUSIONS: Assessing mechanical pain sensitivity is not diagnostic for cervical zygapophysial joint pain. The finding should stimulate further research into a diagnostic tool that is widely used in the clinical examination of patients with pain.
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BACKGROUND: Pain is a common experience in later life. There is conflicting evidence of the prevalence, impact, and context of pain in older people. GPs are criticised for underestimating and under-treating pain. AIM: To assess the extent to which older people experience pain, and to explore relationships between self-reported pain and functional ability and depression. DESIGN OF STUDY: Secondary analysis of baseline data from a randomised controlled trial of health risk appraisal. SETTING: A total of 1090 community-dwelling non-disabled people aged 65 years and over were included in the study from three group practices in suburban London. METHOD: Main outcome measures were pain in the last 4 weeks and the impact of pain, measured using the 24-item Geriatric Pain Measure; depression symptoms captured using the 5-item Mental Health Inventory; social relationships measured using the 6-item Lubben Social Network Scale; Basic and Instrumental Activities of Daily Living and self-reported symptoms. RESULTS: Forty-five per cent of women and 34% of men reported pain in the previous 4 weeks. Pain experience appeared to be less in the 'oldest old': 27.5% of those aged 85 years and over reported pain compared with 38-53% of the 'younger old'. Those with arthritis were four times more likely to report pain. Pain had a profound impact on activities of daily living, but most of those reporting pain described their health as good or excellent. Although there was a significant association between the experience of pain and depressed mood, the majority of those reporting pain did not have depressed mood. CONCLUSION: A multidimensional approach to assessing pain is appropriate. Primary care practitioners should also assess the impact of pain on activities of daily living.
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OBJECTIVES Dentine hypersensitivity (DH) manifests as a transient but arresting oral pain. The incidence is thought to be rising, particularly in young adults, due to increases in consumption of healthy, yet erosive, diets. This study aimed to assess the prevalence of DH and relative importance of risk factors, in 18-35 year old Europeans. METHODS In 2011, 3187 adults were enrolled from general dental practices in France, Spain, Italy, United Kingdom, Finland, Latvia and Estonia. DH was clinically evaluated by cold air tooth stimulation, patient pain rating (yes/no), accompanied by investigator pain rating (Schiff 0-3). Erosive toothwear (BEWE index 0-3) and gingival recession (mm) were recorded. Patients completed a questionnaire regarding the nature of their DH, erosive dietary intake and toothbrushing habits. RESULTS 41.9% of patients reported pain on tooth stimulation and 56.8% scored ≥1 on Schiff scale for at least one tooth. Clinical elicited sensitivity was closely related to Schiff score and to a lesser degree, questionnaire reported sensitivity (26.8%), possibly reflecting the transient nature of the pain, alongside good coping mechanisms. Significant associations were found between clinically elicited DH and erosive toothwear and gingival recession. The questionnaire showed marked associations between DH and risk factors including heartburn/acid reflux, vomiting, sleeping medications, energy drinks, smoking and acid dietary intake. CONCLUSION Overall, the prevalence of DH was high compared to many published findings, with a strong, progressive relationship between DH and erosive toothwear, which is important to recognise for patient preventive therapies and clinical management of DH pain.
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BACKGROUND & Aims: Standardized instruments are needed to assess the activity of eosinophilic esophagitis (EoE), to provide endpoints for clinical trials and observational studies. We aimed to develop and validate a patient-reported outcome (PRO) instrument and score, based on items that could account for variations in patients' assessments of disease severity. We also evaluated relationships between patients' assessment of disease severity and EoE-associated endoscopic, histologic, and laboratory findings. METHODS We collected information from 186 patients with EoE in Switzerland and the US (69.4% male; median age, 43 years) via surveys (n = 135), focus groups (n = 27), and semi-structured interviews (n = 24). Items were generated for the instruments to assess biologic activity based on physician input. Linear regression was used to quantify the extent to which variations in patient-reported disease characteristics could account for variations in patients' assessment of EoE severity. The PRO instrument was prospectively used in 153 adult patients with EoE (72.5% male; median age, 38 years), and validated in an independent group of 120 patients with EoE (60.8% male; median age, 40.5 years). RESULTS Seven PRO factors that are used to assess characteristics of dysphagia, behavioral adaptations to living with dysphagia, and pain while swallowing accounted for 67% of the variation in patients' assessment of disease severity. Based on statistical consideration and patient input, a 7-day recall period was selected. Highly active EoE, based on endoscopic and histologic findings, was associated with an increase in patient-assessed disease severity. In the validation study, the mean difference between patient assessment of EoE severity and PRO score was 0.13 (on a scale from 0 to 10). CONCLUSIONS We developed and validated an EoE scoring system based on 7 PRO items that assesses symptoms over a 7-day recall period. Clinicaltrials.gov number: NCT00939263.
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OBJECTIVES Clinical benefit response (CBR), based on changes in pain, Karnofsky performance status, and weight, is an established palliative endpoint in trials for advanced gastrointestinal cancer. We investigated whether CBR is associated with survival, and whether CBR reflects a wide-enough range of domains to adequately capture patients' perception. METHODS CBR was prospectively evaluated in an international phase III chemotherapy trial in patients with advanced pancreatic cancer (n = 311) in parallel with patient-reported outcomes (PROs). RESULTS The median time to treatment failure was 3.4 months (range: 0-6). The majority of the CBRs (n = 39) were noted in patients who received chemotherapy for at least 5 months. Patients with CBR (n = 62) had longer survival than non-responders (n = 182) (hazard ratio = 0.69; 95% confidence interval: 0.51-0.94; p = 0.013). CBR was predicted with a sensitivity and specificity of 77-80% by various combinations of 3 mainly physical PROs. A comparison between the duration of CBR (n = 62, median = 8 months, range = 4-31) and clinically meaningful improvements in the PROs (n = 100-116; medians = 9-11 months, range = 4-24) showed similar intervals. CONCLUSION CBR is associated with survival and mainly reflects physical domains. Within phase III chemotherapy trials for advanced gastrointestinal cancer, CBR can be replaced by a PRO evaluation, without losing substantial information but gaining complementary information.
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OBJECTIVE To assess the current state of reporting of pain outcomes in Cochrane reviews on chronic musculoskeletal painful conditions and to elicit opinions of patients, healthcare practitioners, and methodologists on presenting pain outcomes to patients, clinicians, and policymakers. METHODS We identified all reviews in the Cochrane Library of chronic musculoskeletal pain conditions from Cochrane review groups (Back, Musculoskeletal, and Pain, Palliative, and Supportive Care) that contained a summary of findings (SoF) table. We extracted data on reported pain domains and instruments and conducted a survey and interviews on considerations for SoF tables (e.g., pain domains, presentation of results). RESULTS Fifty-seven SoF tables in 133 Cochrane reviews were eligible. SoF tables reported pain in 56/57, with all presenting results for pain intensity (20 different outcome instruments), pain interference in 8 SoF tables (5 different outcome instruments), and pain frequency in 1 multiple domain instrument. Other domains like pain quality or pain affect were not reported. From the survey and interviews [response rate 80% (36/45)], we derived 4 themes for a future research agenda: pain domains, considerations for assessing truth, discrimination, and feasibility; clinically important thresholds for responder analyses and presenting results; and establishing hierarchies of outcome instruments. CONCLUSION There is a lack of standardization in the domains of pain selected and the manner that pain outcomes are reported in SoF tables, hampering efforts to synthesize evidence. Future research should focus on the themes identified, building partnerships to achieve consensus and develop guidance on best practices for reporting pain outcomes.
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BACKGROUND CONTEXT Several randomized controlled trials (RCTs) have compared patient outcomes of anterior (cervical) interbody fusion (AIF) with those of total disc arthroplasty (TDA). Because RCTs have known limitations with regard to their external validity, the comparative effectiveness of the two therapies in daily practice remains unknown. PURPOSE This study aimed to compare patient-reported outcomes after TDA versus AIF based on data from an international spine registry. STUDY DESIGN AND SETTING A retrospective analysis of registry data was carried out. PATIENT SAMPLE Inclusion criteria were degenerative disc or disc herniation of the cervical spine treated by single-level TDA or AIF, no previous surgery, and a Core Outcome Measures Index (COMI) completed at baseline and at least 3 months' follow-up. Overall, 987 patients were identified. OUTCOME MEASURES Neck and arm pain relief and COMI score improvement were the outcome measures. METHODS Three separate analyses were performed to compare TDA and AIF surgical outcomes: (1) mimicking an RCT setting, with admission criteria typical of those in published RCTs, a 1:1 matched analysis was carried out in 739 patients; (2) an analysis was performed on 248 patients outside the classic RCT spectrum, that is, with one or more typical RCT exclusion criteria; (3) a subgroup analysis of all patients with additional follow-up longer than 2 years (n=149). RESULTS Matching resulted in 190 pairs with an average follow-up of 17 months that had no residual significant differences for any patient characteristics. Small but statistically significant differences in outcome were observed in favor of TDA, which are potentially clinically relevant. Subgroup analyses of atypical patients and of patients with longer-term follow-up showed no significant differences in outcome between the treatments. CONCLUSIONS The results of this observational study were in accordance with those of the published RCTs, suggesting substantial pain reduction both after AIF and TDA, with slightly greater benefit after arthroplasty. The analysis of atypical patients suggested that, in patients outside the spectrum of clinical trials, both surgical interventions appeared to work to a similar extent to that shown for the cohort in the matched study. Also, in the longer-term perspective, both therapies resulted in similar benefits to the patients.
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Introducción: El estudio ATHAC recoge datos sobre heridas agudas y crónicas que son candidatas a un tratamiento a base de apósitos grasos neutros como la gama URGOTUL. Objetivos: Describir las características de las heridas, describir los tratamiento aplicados a estas heridas y explorar las opiniones de los profesionales de enfermería y los pacientes sobre los tratamientos en términos de aplicabilidad, adaptabilidad y confort para el paciente. Material y métodos: 1.500 pacientes fueron incluidos en el estudio de acuerdo al tipo de herida y a los tratamientos en uso. Se recogieron datos a partir de dos cuestionarios: uno para el paciente y otro para la enfermera responsable de sus cuidados. Las enfermeras recogieron los datos en el primer día de inclusión y los pacientes respondían al cuestionario 1 mes más tarde o antes si la herida había cicatrizado. Las variables recogidas por la enfermera fueron: datos sociodemográficos, etiología de las lesiones, características y localización de las heridas, aspectos y opiniones sobre el tratamiento. A los pacientes se les preguntó por la duración del tratamiento, el estado de la lesión en el momento de contestar y desde su punto de vista, así como su opinión sobre el dolor, satisfacción general y aceptabilidad. Se llevaron a cabo análisis descriptivos uni y bivariados. Para cada paciente, si tenía más de una lesión, se recogieron datos de la lesión de mayor tamaño. Resultados: Finalmente, se estudiaron 1.432 pacientes con una o más lesiones (420 tenían más de una lesión). El 60,4% eran mujeres y la edad media fue de 66 ± 19 años. En el caso de las heridas crónicas (657 lesiones) predominaron las úlceras venosas (47%) y las úlceras por presión (23%). En las heridas agudas (775 lesiones), la mayoría fueron traumáticas (41%) y quemaduras (32,5%). La principal localización en todas las lesiones fueron los miembros inferiores (57,4% en heridas crónicas y 39% en agudas). El 84,4% de los casos indicó presentar algún tipo de dolor previo al comienzo de este estudio. Al finalizar el estudio, un porcentaje menor del 20% indicó presentar algún tipo de dolor. El 72% de las heridas agudas y el 35% de las crónicas, como refieren los pacientes, había cicatrizado al finalizar el estudio (en un tiempo medio de entre 20-40 días). El 54% de las heridas crónicas evoluciona favorablemente y el 26% de las agudas. Más del 80% de las heridas estudiadas fueron tratadas con la gama URGOTUL. Conclusión: URGOTUL es una buena opción para el tratamiento de este tipo de heridas, especialmente para las heridas agudas, en relación a su carácter atraumático y a su capacidad de cicatrización, así como la buena aceptación y satisfacción de los pacientes.
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1.1 Introduction and Purpose: Adequate postoperative analgesia in the opioid tolerant with chronic non-malignant pain is challenging. Multimodal pain relief regimens include regional anesthesia but opioid tolerant patients report increased postoperative pain and opioid consumption. This study compared analgesia in opioid naïve and tolerant patients receiving postoperative sciatic nerve blockade for foot and ankle surgery. 1.2 Method: Preoperative pain scores, trauma, maintenance and intraoperative opioid doses and following postoperative sciatic nerve blockade, patient self-reported pain scores and opioid consumption at discharge from the post-anesthesia unit and 24 hours were recorded. 1.3 Results: 191 patients enrolled. 40.3% were opioid tolerant and 33% had lower extremity trauma. Preoperative, immediate and delayed postoperative pain scores and intraoperative, immediate and 24 hour postoperative consumption of opioids were increased in opioid tolerant patients. Trauma and continuous infusion in opioid naïve and tolerant groups did not result in differences in 24 hour opioid consumption. 1.4 Limitations: Small subgroups and use of the pain score limited the accuracy of results. 1.5 Conclusion: Opioid tolerant patients require greater analgesic doses following sciatic nerve blockade for foot and ankle surgery. 24 hour opioid consumption for opioid naïve and tolerant patients is neither influenced by lower extremity injury nor continuous infusion.
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Introduction: Assessment of expertise in regional anesthesia techniques is traditionally based upon quota fulfillment of procedures during training. Validation of practitioner proficiency in performing procedures in surgical specialties has moved from simple measurement of technical skills to evaluation of global patient outcomes. Complete absence of pain as a result of nerve blockade is the most important clinical endpoint but patient, technical and procedural factors influence results. The purpose of this study was to measure the postoperative pain scores and associated analgesic medication requirements for patients administered sciatic nerve blockade by nurse anesthetists and determine patient or procedural factors that influenced this outcome. Methods: Either nerve stimulator or ultrasound guided sciatic nerve blockade was administered by nurse anesthetists under the supervision of regional anesthesia faculty. Patient demographic data that was collected included gender, body mass index, surgical procedure, and pre-existing chronic pain with associated opioid use. Patient self-reported pain scores and opioid analgesic dosages in the preoperative, intraoperative, immediate postoperative and 24 hour post procedure intervals were recorded. Results: 22 nurse anesthetists administered sciatic nerve blockade to 48 patients during a 36 month interval. Transition from a nerve stimulator to ultrasound guided sciatic nerve block technique resulted in lower mean pain scores. Patients reporting chronic opioid use were observed to have elevated perioperative opioid analgesic requirements and pain scores compared to opioid naïve patients. Conclusion: Effective analgesia is a prime measure for assessing expertise in regional anesthesia and continuous evaluation of this outcome in everyday practice is proposed.
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Chronic pelvic pain (CPP), a common cause of disability in women, is a condition best viewed in the biopsychosocial framework. Psychological interventions are frequently considered alongside medical and surgical treatments. Our objective was to evaluate the effectiveness of psychological therapies for the treatment of CPP. Electronic literature searches were conducted in Medline, Embase, PsycInfo and DARE databases from database inception to April 2010. Reference lists of selected articles were searched for further articles. The studies selected were randomized controlled trials of psychological therapies in patients with CPP compared with no treatment, standard gynecological treatment or another form of psychological therapy. Two reviewers independently selected articles without language restrictions and extracted data covering study characteristics, study quality and results. Reduction in pain, measured using visual analog scales or other measurements, was the main outcome measure. Of the 107 citations identified, four studies satisfied the inclusion criteria. Compared with no psychological intervention, therapy produced a standardized mean pain score of -3.27 [95% confidence interval (CI) -4.52 to -2.02] and 1.11 (95% CI -0.05 to 2.27) at 3 months and -3.95 (95% CI -5.35 to -2.55) and 0.54 (95% CI -0.78 to 1.86) at 6 months and greater, based on a visual analog scale score of 0-10. The current evidence does not allow us to conclude whether psychological interventions have an effect on self-reported pain scores in women with CPP.
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Background and objective: Spinal cord stimulation (SCS) is believed to exert supraspinal effects; however, these mechanisms are still far from fully elucidated. This systematic review aims to assess existing neurophysiological and functional neuroimaging literature to reveal current knowledge regarding the effects of SCS for chronic neuropathic pain on brain activity, to identify gaps in knowledge, and to suggest directions for future research. Databases and data treatment: Electronic databases and hand-search of reference lists were employed to identify publications investigating brain activity associated with SCS in patients with chronic neuropathic pain, using neurophysiological and functional neuroimaging techniques (fMRI, PET, MEG, EEG). Studies investigating patients with SCS for chronic neuropathic pain and studying brain activity related to SCS were included. Demographic data (age, gender), study factors (imaging modality, patient diagnoses, pain area, duration of SCS at recording, stimulus used) and brain areas activated were extracted from the included studies. Results: Twenty-four studies were included. Thirteen studies used neuroelectrical imaging techniques, eight studies used haemodynamic imaging techniques, two studies employed both neuroelectrical and haemodynamic techniques separately, and one study investigated cerebral neurobiology. Conclusions: The limited available evidence regarding supraspinal mechanisms of SCS does not allow us to develop any conclusive theories. However, the studies included appear to show an inhibitory effect of SCS on somatosensory evoked potentials, as well as identifying the thalamus and anterior cingulate cortex as potential mediators of the pain experience. The lack of substantial evidence in this area highlights the need for large-scale controlled studies of this kind.
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Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease, rare, multisystem, with a very heterogeneous clinical and serological manifestations standard. The patient, in addition to suffering injuries on his physical and physiological functioning, may also face a number of psychosocial problems. Research indicates that SLE can cause significant damage to the psychological realm, especially with the presence of anxiety and depression. In 1999, the American College of Rheumatology (ACR), proposed the establishment of 19 neuropsychiatric clinical syndromes attributed to SLE. Depression lies between mood disorders and is one of the most common psychiatric manifestations in this group, being found more frequently in these patients than in the general population. Studies also suggest that social support plays an important role in the development of coping strategies, in SLE management and depression. This study has as main objective verify the association between depressive symptoms and perceived social support in patients with SLE. The specific objectives turned to: investigte the prevalence of depressive symptoms; investigate the perceived social support and verify if there is an association between depression, social support and sociodemographic variables. We used a sociodemographic questionnaire, the Beck Depression Scale, and the Perceived Social Support Scale. The analysis was performed through descriptive and inferential statistics. The final sample could count with 79 SLE women, with an average age of 35.7 years. 44 (55.7%) of the participants were married. Only 6 (7.59%) had completed higher education and 32 (40.51%) have not finished high school. Seventy-one (89.87%) had an income below three minimum salaries and 71 (89.87) practiced a religion, and the Catholic (67.71%) was the most mentioned by them. Of the total sample, 37 (46.74%) had been diagnosed SLE more than 7 years before, and 25 (31.65%) had the disease for more than 10 years. Only 19 (24.05%) had some work activity. Forty-two of them (53.17%) had depressive symptoms levels from mild to severe, and 51 (64.46%) reported pain levels of 5, or above. The study found a significant association between depressive symptoms and pain (p = 0.013) and depressive symptoms and work activity (p = 0.02). When we examined the perception of social support, the results showed high levels among participants. Using the Spearman correlation test we found a strong correlation between depressive symptoms and social support (p= 0,000037). It means that the higher the frequency of support, the lower the score of depression. These findings are relevant because depressive symptoms in patients with SLE have a multicausal and multifactorial character and may remain unnoticed, since many of them are confused with the manifestations of the disease. This fact requires a careful assessment from professionals, not only in the clinical setting, but also considering other psychosocial reasons, that may be influencing the emergence or worsening of symptoms. These results also corroborate other studies, which not only confirm the predictive role of social support in the physical wellbeing, but also in the psychological.
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Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disease, rare, multisystem, with a very heterogeneous clinical and serological manifestations standard. The patient, in addition to suffering injuries on his physical and physiological functioning, may also face a number of psychosocial problems. Research indicates that SLE can cause significant damage to the psychological realm, especially with the presence of anxiety and depression. In 1999, the American College of Rheumatology (ACR), proposed the establishment of 19 neuropsychiatric clinical syndromes attributed to SLE. Depression lies between mood disorders and is one of the most common psychiatric manifestations in this group, being found more frequently in these patients than in the general population. Studies also suggest that social support plays an important role in the development of coping strategies, in SLE management and depression. This study has as main objective verify the association between depressive symptoms and perceived social support in patients with SLE. The specific objectives turned to: investigte the prevalence of depressive symptoms; investigate the perceived social support and verify if there is an association between depression, social support and sociodemographic variables. We used a sociodemographic questionnaire, the Beck Depression Scale, and the Perceived Social Support Scale. The analysis was performed through descriptive and inferential statistics. The final sample could count with 79 SLE women, with an average age of 35.7 years. 44 (55.7%) of the participants were married. Only 6 (7.59%) had completed higher education and 32 (40.51%) have not finished high school. Seventy-one (89.87%) had an income below three minimum salaries and 71 (89.87) practiced a religion, and the Catholic (67.71%) was the most mentioned by them. Of the total sample, 37 (46.74%) had been diagnosed SLE more than 7 years before, and 25 (31.65%) had the disease for more than 10 years. Only 19 (24.05%) had some work activity. Forty-two of them (53.17%) had depressive symptoms levels from mild to severe, and 51 (64.46%) reported pain levels of 5, or above. The study found a significant association between depressive symptoms and pain (p = 0.013) and depressive symptoms and work activity (p = 0.02). When we examined the perception of social support, the results showed high levels among participants. Using the Spearman correlation test we found a strong correlation between depressive symptoms and social support (p= 0,000037). It means that the higher the frequency of support, the lower the score of depression. These findings are relevant because depressive symptoms in patients with SLE have a multicausal and multifactorial character and may remain unnoticed, since many of them are confused with the manifestations of the disease. This fact requires a careful assessment from professionals, not only in the clinical setting, but also considering other psychosocial reasons, that may be influencing the emergence or worsening of symptoms. These results also corroborate other studies, which not only confirm the predictive role of social support in the physical wellbeing, but also in the psychological.
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Background: Myeloproliferative neoplasms (MPNs) including the classic entities; polycythemia vera (PV), essential thrombocythemia (ET) and primary myelofibrosis are rare diseases with unknown aetiology. The MOSAICC study, is an exploratory case–control study in which information was collected through telephone questionnaires and medical records. Methods: As part of the study, 106 patients with MPN were asked about their perceived diagnosis and replies correlated with their haematologist’s diagnosis. For the first time, a patient perspective on their MPN diagnosis and classification was obtained. Logistic regression analyses were utilised to evaluate the role of variables in whether or not a patient reported their diagnosis during interview with co-adjustment for these variables. Chi square tests were used to investigate the association between MPN subtype and patient reported categorisation of MPN. Results: Overall, 77.4 % of patients reported a diagnosis of MPN. Of those, 39.6 % recognised MPN as a ‘blood condition’,23.6 % recognised MPN as a ‘cancer’ and 13.2 % acknowledged MPN as an ‘other medical condition’. There was minimal overlap between the categories. Patients with PV were more likely than those with ET to report their disease as a ‘blood condition’. ET patients were significantly more likely than PV patients not to report their condition at all.Patients from a single centre were more likely to report their diagnosis as MPN while age, educational status, and WHO re-classification had no effect. Conclusions: The discrepancy between concepts of MPN in patients could result from differing patient interest in their condition, varying information conveyed by treating hematologists, concealment due to denial or financial concerns. Explanations for the differences in patient perception of the nature of their disease, requires further, larger scale investigation.