Health-Related Quality of Life in Patients with Primary Immune Thrombocytopenia (pITP): Investigating Differences Amongst Newly Diagnosed, Persistent and Chronic Pitp Patients

Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 2122-2122
Author(s):  
Fabio Efficace ◽  
Paola Fazi ◽  
Cristina Santoro ◽  
Gianluca Gaidano ◽  
Francesco Cottone ◽  
...  
Keyword(s):  
General Population ◽  
Sex Education ◽  
Geographic Area ◽  
Newly Diagnosed ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Hrqol Assessment ◽  
The Mean

Abstract Introduction: Very little is known about health-related quality of life (HRQOL) of patients diagnosed with primary Immune Thrombocytopenia (pITP). Also, the paucity of available data mainly stems from patients enrolled in randomized controlled trials thus limiting generalizability of findings to patients routinely seen in real world practice. Aim: The main objective of this study is to compare HRQOL of pITP patients with that of their peers from the general population and to investigate whether HRQOL differences exist among those classified as (Rodeghiero et al, Blood. 2009 Mar 12;113(11):2386-93): newly diagnosed, persistent and chronic pITP patients. Methods: Adult patients with pITP were consecutively enrolled, regardless of therapy, in 25 centers. All patients were invited by their treating physicians in the hospital. Consenting patients were requested to complete a battery of patient-reported outcome (PRO) questionnaires. The primary HRQOL outcome measure was the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36). It consists of 36 items covering eight generic health status/QoL domains: physical functioning (PF), role limitations due to physical health (RP), bodily pain (BP), general health perceptions (GH), vitality (VT), social functioning (SF), role limitations due to emotional problems (RE), and mental health (MH). To minimize possible bias in comparisons of pITP patients HRQOL outcomes to general population norms, a propensity score matching approach plus further regression adjustment was adopted to select the best possible case-control pairs. The group of potential controls was a representative sample of 1997 adults without the disease from a previous study which provided SF-36 population norms. Controls from these data were matched to pITP patients by an optimal nearest-neighbour matching algorithm based on age, sex, education, and geographic area. Multiple linear regression analyses were performed on the matched dataset to compute adjusted mean differences (α=0.05), using selected a priori key HRQOL confounders as covariates: age, sex, education, geographic area, and marital status. Effect sizes were computed and clinical significance of mean scores SF-36 differences was also estimated. Results: Out of 424 patients invited to participate, 420 returned the questionnaires (99% compliance). At study participation, mean age of patients was 54 years (range 18-89) with the majority being women (N=264, 64%). The mean platelet count at diagnosis was 27.6 x109/L and the mean platelet count at last medical visit, before the HRQOL assessment, was 119 x109/L. Two-hundred twenty patients (50%) had at least 1 comorbidity. At the time of HRQOL assessment there were 82%, 64% and 44% of patients receiving active treatments, respectively in the newly diagnosed, persistent and chronic pITP group. Splenectomy was performed in 8% and 22% of the persistent and chronic pITP patients, respectively. No statistically significant differences existed among the three disease groups with regard to age, gender and presence of comorbidity. When compared with their peers in the general population, worse statistically significant outcomes (P<0.05) were found for five out of the eight SF-36 scales. The largest clinically meaningful difference (Δ=16 points) was found for the RE scale. Comparison by disease group (each of which versus their respective peers in the general population), revealed greater HRQOL impairments in persistent pITP patients across all physical and mental health HRQOL domains. Differences between newly diagnosed and chronic pITP patients with their peers in the general populations were marginal. However, for persistent pITP patients medium to large impairments were found when compared with their peers in the following domains: PF (ES=0.87, P=0.001), RP (ES=0.93, P<0.001), and SF (ES=0.78, P=0.004), RE (ES=0.74, P=0.004), and MH (ES=0.55, P=0.026). Conclusions: Persistent pITP patients are those experiencing the most important limitations in both physical and mental HRQOL domains with respect to their peers from the general population. This information can help physicians to pay special attention to this patient group in their daily clinical practice. Disclosures Gaidano: Celgene: Research Funding; MorphoSys; Roche; Novartis; GlaxoSmithKline; Amgen; Janssen; Karyopharm: Honoraria, Other: Advisory boards. Rodeghiero:Celgene Corporation: Honoraria, Research Funding.

Health-Related Quality of Life in Patients with Primary Immune Thrombocytopenia Compared with the General Population

Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 2056-2056
Author(s):  
Fabio Efficace ◽  
Paola Fazi ◽  
Francesco Rodeghiero ◽  
Gianluca Gaidano ◽  
Piercarla Schinco ◽  
...  
Keyword(s):  
General Population ◽  
Meaningful Difference ◽  
Newly Diagnosed ◽  
Age And Gender ◽  
Sf 36 ◽  
Primary Immune Thrombocytopenia ◽  
Related Quality ◽  
Health Related ◽  
And Gender

Abstract Abstract 2056 Background: Recent international guidelines (Rodeghiero F, et al. Blood 113:2386–93, 2009) emphasize the importance of health-related quality of life (HRQOL) in patients with primary immune thrombocytopenia (pITP) and are advocating for more research in this area. However, very little research has been conducted on HRQOL of these patients. Aim: The main objective of this study was to identify specific limitations of HRQOL in pITP patients (ie, chronic, persistent and newly diagnosed patients) in comparison with their peers from the general population. Also, socio-demographic and clinical factors were considered to evaluate HRQOL impairment. Patients and Methods: Data were gathered through an ongoing multicenter observational study that recruits p-ITP patients. HRQOL was the primary endpoint of the study and was assessed with Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) that consists of 36 items covering eight generic health status/QoL domains: physical functioning (PF), role limitations due to physical health (RP), bodily pain (BP), general health perceptions (GH), vitality (VT), social functioning (SF), role limitations due to emotional problems (RE), and mental health (MH). All scales ranging between 0 and 100 with higher scores representing better outcomes. Two summary scores, namely the physical component summary (PCS) and the mental component summary (MCS) are derived from a weighted combination of the eight scales. Mean SF-36 scores were compared to available national general population reference values and analyses were adjusted for age and gender. Based on previous research, eight points were considered to be a minimally important difference (MID) for the first eight SF-36 scales, while a difference of two points was judged as MID for the PCS and the MCS scores. A score difference at least equal to MID was considered as a clinically meaningful difference. Socio-demographic, clinical and laboratory data were also collected to investigate their association with HRQOL outcomes. Univariate and multivariate linear regression analyses were used. Results: To date of the 256 pITP patients included in this study, 69%, 16% and 15%, were diagnosed with chronic, persistent and newly diagnosed pITP respectively. Present analysis is based on 175 patients with HRQOL data currently available. At study participation, mean age of patients was 54 years (67% female and 33% male). At least one comorbidity was present in 53% of patients. The median time from initial diagnosis to study entry was 0.3, 8 and 77 months respectively for newly diagnosed, persistent and chronic patients. Age and gender adjusted comparisons with general population norms revealed worse outcomes for the following scales: RP (P<.001), GH (P=.01), SF (P=.002), RE (P=.002). The largest clinically meaningful difference (Δ=13.4 points) was found for the RP domain with mean scores of 58.3 vs. 71.7 respectively for pITP patients and the general population. Age specific comparisons, (18–54, 55–64 and >65 years) suggested an almost uniform pattern in all scales with worse outcomes between pITP patients and population controls among the youngest groups. Statistically and clinically meaningful differences (ie, >8 points) were found in five out of the eight scales of the SF-36 in the youngest group of patients (18–54 years), when compared with their peers, while these differences were not present in the other age group categories. Comorbidity was the main factor influencing HRQOL by independently predicting worse HRQOL outcomes across all domains of the SF-36. SF-36 mean score differences in patients with or without comorbidity, were more than twice the magnitude of a clinically meaningful difference for PF and RP, being respectively: 69.7 vs. 87 and 51.3 vs. 68 points. Conclusions: This study suggests that HRQOL of p-ITP patients is far from optimal. In particular, role limitations (i.e., in work or other daily activities) due to physical health seems the major constraint faced by these patients when compared to their peers in the general population. Comorbidity seems the major factor associated with a poorer HRQOL profile. These findings need to be confirmed with a larger sample size and will eventually help guide the development of patient-centered supportive care programs. Disclosures: No relevant conflicts of interest to declare.

scholarly journals Adult long-term health-related quality of life of congenital hydrocephalus patients

2015 ◽  
Vol 16 (6) ◽  
pp. 621-625 ◽  
Author(s):  
Anja Kutscher ◽  
Ulf Nestler ◽  
Matthias K. Bernhard ◽  
Andreas Merkenschlager ◽  
Ulrich Thome ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Summary Score ◽  
Congenital Hydrocephalus ◽  
Role Functioning ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
The Mean

OBJECT Congenital hydrocephalus has a major impact on the lives of patients and their relatives, as well as their long-term neurological development and social integration. The aim of this study was to assess the self-reported health-related quality of life (HRQOL) of patients after reaching adulthood. METHODS A total of 31 patients who required CSF shunt treatment for congenital hydrocephalus within the 1st year of life (between 1963 and 1987) agreed to undergo a structured SF-36 self-assessment. An age-matched German standard cohort was used as control. Additional parameters of surgical, social, and global neurological outcome were analyzed. The mean patient age was 35 years (range 26–51 years, 13 females and 18 males). Hydrocephalus etiologies were posthemorrhagic hydrocephalus (n = 9), postinfectious hydrocephalus (n = 5), aqueductal stenosis (n = 10), myelomeningocele (n = 2), and unknown cause (n = 5). RESULTS The mean modified Rankin Scale score was 1.6 (range 0–4). Hydrocephalic patients achieved lower scores for the SF-36 items physical functioning (70.5 vs 93.5, p < 0.05), physical role functioning (74.2 vs 88.3, p < 0.05), and general health perceptions (64.5 vs 72.3, p < 0.05). Emotional, social role functioning, and mental health items did not differ between the groups. Assessment of vitality and pain resulted in a trend to worse values. Whereas the Physical Component Summary score was lower (46.1 vs 54.3, p < 0.05), the Mental Component Summary score was not significantly different (50.2 vs 48.7, p = 0.3). There was neither a statistically significant difference between subgroups of different etiologies nor an association with the number of subsequent hydrocephalus-related surgeries. CONCLUSIONS Adult HRQOL for patients with congenital hydrocephalus appears to be similar to that for healthy con with regard to mental health and social functioning aspects. Physical impairment is a predominant factor of compro quality of life.

scholarly journals The impact of chronic orofacial pain on health-related quality of life

2020 ◽  
Vol 20 (2) ◽  
pp. 329-338
Author(s):  
Heli Forssell ◽  
Kirsi Sipilä ◽  
Tuija Teerijoki-Oksa ◽  
Pekka Vartiainen ◽  
Hannu Kautiainen ◽  
...  
Keyword(s):  
Chronic Pain ◽  
General Population ◽  
Pain Interference ◽  
Hrqol Instrument ◽  
Related Quality ◽  
Chronic Orofacial Pain ◽  
Health Related ◽  
The Mean ◽  
And Gender

AbstractBackground and aimsHealth-related quality of life (HRQoL) assessments have been widely used in pain medicine as they are able to reflect the subjective and multidimensional nature of chronic pain. Studies have shown a consistent impairment in HRQoL in different chronic pain conditions. However, it is not known whether HRQoL is impaired in chronic orofacial pain (OFP). The generic 15D HRQoL instrument has been shown to fare as well as or better than other generic HRQoL instruments in the study of chronic pain. The aim was to investigate HRQoL in patients with chronic OFP using the generic 15D HRQoL instrument. The validity of the instrument was tested by studying the association of the 15D data with pain interference.MethodsOne hundred fifty-one patients (mean age 50 years, SD 15 years, 119 females) were recruited from three tertiary facial pain clinics. HRQoL data of the participants were contrasted with that of an age- and gender- standardized sample of general population by comparing the mean 15D scores and profiles. The data for the general population came from the National Health 2011 Survey representing Finnish population aged 18 years and older. Pain interference was assessed using Brief Pain Inventory. Based on pain interference distribution the participants were divided into tertiles. Statistical comparison between patient and population HRQoL values were performed using Monte-Carlo-type simulations. Statistical significance for the hypothesis of linearity was evaluated by using generalized linear models.ResultsThe mean 15D score of OFP patients (0.824, SD 0.113) was statistically significantly lower than that of the age- and gender-standardized general population (0.929, SD 0.019) (p < 0.001). The difference between the patients and the general population was also clinically important, i.e. over the minimum clinically important difference in the 15D score. All mean 15D dimension values were significantly lower compared with the general population values (p < 0.001 for all dimensions). The largest differences were seen in the dimensions of discomfort and symptoms (0.418, SD 0.222 vs. 0.816, SD 0.027), sleeping (0.693, SD 0.258 vs. 0.838, SD 0.029), and vitality (0.702, SD 0.221 vs. 0.884 SD 0.026). There was a statistically significant linear decrease in the 15D dimension values (p < 0.001) with increasing pain interference. The greatest differences were found on the dimensions of discomfort and symptoms, sleeping and vitality.ConclusionsHRQoL is significantly impaired in patients with chronic OFP. A decrease in the 15D dimension values with increasing pain interference indicated convergent validity between 15D and pain interference.ImplicationsThe findings suggest that 15D is an appropriate instrument for use in the assessment of HRQoL in OFP patients. By showing the usefulness of the 15D, the present study may encourage further use of generic HRQoL assessments in the study of chronic OFP, and contribute e.g. to the implementation of HRQoL as one of the core outcome measures in future treatment studies on chronic OFP.

scholarly journals Measuring Health-Related Quality of Life in Vietnamese Patients After Kidney Transplantation

2021 ◽  
Vol 8 ◽  
Author(s):  
Le Nguyen Vu ◽  
Nguyen Quang Nghia ◽  
Tran Minh Tuan ◽  
Tran Ha Phuong ◽  
Hoang-Long Vo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Kidney Transplantation ◽  
Kidney Disease ◽  
Correlation Coefficient ◽  
Health Related Quality ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
The Mean

Objectives: To consider that the health-related quality of life (HRQOL) has become an inherent part of the patient outcomes in the care and treatment after kidney transplantation (KT). This study aimed to measure HRQOL among a representative sample size of patients after KT by using both the Short Form 36 (SF-36) and the Kidney Disease Quality of Life 36 (KDQOL-36).Methods and Results: Data of this cross-sectional design were collected in the Organ Transplant Center, Viet Duc University Hospital (Hanoi, Vietnam) from January 2020 to March 2020 and included the patients aged 18 years or over after KT at 6 months, 1 year, and 3 years postoperatively. HRQOL was evaluated through face-to-face interviews by means of the SF-36 and KDQOL-36 measurement tools. According to the SF-36, the overall mean score of HRQOL was 69.13 ± 15.55 and the two domains were the highest scores of “Mental Health” (81.23 ± 14.28) and “General Health” (80.06 ± 14.81). When measuring with the KDQOL-36, the overall mean score was 68.67 ± 13.75 and was the highest in the domain “Symptoms and Problems of Kidney Disease” (87.06 ± 16.00). Both instruments had good reliability for those after KT. The reliability of the SF-36 was high with Cronbach's coefficients α = 0.90. There were positive relationships between the dimensions measured by the KDQOL-36 and SF-36 (correlation coefficient: 0.03–0.69). Similarly, the domains of the SF-36 also had positive correlations with the KDQOL-36 (correlation coefficient: 0.18–0.51). The correlation coefficient between overall HRQOL scores of the SF-36 and KDQOL-36 was 0.62, indicating a strong correlation between the SF-36 and KDQOL-36.Conclusions: There were slight fluctuations in the HRQOL score in domains in the 3-year follow-up stages, suggesting not having clear change. The mean SF-36 score was consistent with the mean KDQOL-36 score. High reliability and strong correlation were found between two instruments of the SF-36 and KDQOL-36. This study provides the reliability and constructs validity in the combination of two sets of the SF-36 and KDQOL-36 scales for the assessment of HRQOL among post-KT patients, thereby assisting physicians and health professionals in the clinical decision-making, assessment of therapeutic efficacy, and understanding of treatment risk.

scholarly journals Relation Between Clinical Oral Health Status, Oral Health Related Quality of Life, Denture Material Type and Self-perceived General Health, in a General Population

2019 ◽  
Vol 70 (9) ◽  
pp. 3315-3324
Author(s):  
Alexandru Gratian Grecu ◽  
Andra Elena Aungurencei ◽  
Dan Lucian Dumitrascu
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
General Health ◽  
Oral Health Status ◽  
Health Related Quality ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
The Mean

The purpose of the current study was to assess the oral health related quality of life (OHRQoL), general health related quality of life (HRQoL), clinical oral and denture status, as well as their interrelation, within a hospitalized general population. The Romanian versions of the Oral Health Impact Profile-49 (OHIP-49Ro), SF-36 questionnaires, together with an additional set of oral health assessment questions, were administered under the interview format to 170 patients, hospitalized in the Second Medical Clinic of Internal Medicine, Cluj-Napoca, Romania. The patients also underwent clinical examination, based on which the DMFT was calculated. Denture status, was as well, registered, together with the denture material. Each patient provided informed consent, prior to any examination. Questionnaire scores were calculated and used for the univariate descriptive statistics, reflecting oral health, OHRQoL and HRQoL sample tendencies. Successively, multiple regression analysis was applied, with the purpose of investigating the relationship between: the clinical oral health status, OHRQoL and HRQoL. In the first model, OHRQoL, while in the second model the dependent variable was represented by the HRQoL, each having a set of established predictors. Additionally, for denture wearing patients, OHRQoL variations in respect to the denture material were assessed, using one-way ANOVA. The mean OHIP-49Ro overall score was 31.90. The mean SF-36 subscales score was 60.66. The mean DMFT score was 18.47. For both regression analyses, all the regression models were significant. For the first model, the predictors accounted for 48.5% of variance in OHRQoL. For the second model, the highest percent of variance, explained by the predictors, was registered for the Mental Health subscale (22.8%). DMFT, as a clinical measure, was a statistically significant predictor rather for the perception in general health. However, OHRQoL was a good predictor for HRQoL, as an integrated part of it. Moreover, the one-way ANOVA indicated statistically significant differences in OHRQoL perception, in respect to the denture material F(2, 82) = 3.253, p = 0.044. The current study indicated complex relations between the patients� clinical status, the OHRQoL and HRQoL. The clinical determinants presented direct impact on both OHRQoL and HRQoL. More balanced HRQoL scores suggested that patients focused more on the perception of general health outcomes.

Long-Term Health Related Quality Of Life and Symptom Burden In Patients With Acute Promyelocytic Leukemia Treated With All-Trans Retinoic Acid (ATRA) and Chemotherapy

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 770-770 ◽  
Author(s):  
Fabio Efficace ◽  
Alessandro Rambaldi ◽  
Eros Di Bona ◽  
Francesco Fabbiano ◽  
Francesco Cottone ◽  
...  
Keyword(s):  
General Population ◽  
Symptom Burden ◽  
Trans Retinoic Acid ◽  
All Trans Retinoic Acid ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
And Gender

Abstract Background The combination of all-trans retinoic acid (ATRA) and anthracycline-based chemotherapy regimens is currently considered the standard of care for newly diagnosed acute promyelocytic leukemia (APL) patients. This combination has greatly contributed to convert APL from a frequently fatal disease to a highly curable one. However, there is lack of data on the impact of such therapies on patients’ health-related quality of life (HRQOL). Objective The main objective of this study was thus to investigate long-term HRQOL of APL patients previously treated with ATRA plus anthracycline-based chemotherapy. The physical and mental HRQOL profile of these patients was compared with that of matched control subjects from the general population to identify specific areas most in need of attention in long-term follow-up care. A secondary objective was to outline symptoms’ burden from the patients’ perspective. Patients and Methods Data were gathered through an ongoing multicenter survivorship study that recruits APL patients previously enrolled in two large GIMEMA trials (i.e., AIDA0493 and AIDA 2000). In both trials, APL patients were treated with ATRA plus Idrarubicin (AIDA). The main inclusion criterion was having survived the initial diagnosis for more than 5 years and being in complete remission (CR). Generic HRQOL was assessed with the SF-36 that consists of 36 items covering eight generic health status/QoL domains: physical functioning (PF), role limitations due to physical health (RP), bodily pain (BP), general health perceptions (GH), vitality (VT), social functioning (SF), role limitations due to emotional problems (RE) and mental health (MH). All scales ranged between 0 and 100, with the higher scores representing better outcomes. Clinical significance was evaluated and eight points were considered to be a minimally important difference for the eight SF-36 scales. Mean SF-36 scores were compared to available national general population reference values (i.e., 1997 subjects without cancer) and all analyses were adjusted for age and gender. Symptom burden was assessed according to the M.D. Anderson Symptom Inventory (MDASI). Symptom severity was assessed for the following symptoms: fatigue, pain, sleep disturbance, drowsiness, poor appetite, shortness of breath, nausea, vomiting, dry mouth, numbness, difficulty remembering, distress and sadness. All items were rated on a numeric rating scale from 0 to 10, with the higher scores indicating a higher level of symptoms. These were categorized as “mild” (ratings between 0 and 3) and “moderate to severe” (ratings between 4 to 10). Results Analysis is based on 136 adult APL patients who agreed to participate. At study participation, the mean age of patients was 52 years (55% males and 45% females) and the median time from diagnosis was 13 years (range: 4.5-20). Age and gender adjusted comparisons between APL patients and the general population norms revealed worse outcomes for the following scales: RP (P&lt;.001) and RE (P&lt;.001). Such differences were more than six times the magnitude of a clinically meaningful difference (i.e., at least 8 points), respectively for the physical (Δ=51 points) and the emotional scales (Δ=49 points) of the SF-36. Analysis within our patient cohort revealed that older APL patients (i.e., those aged more than 52 years) had a statically significant lower physical functioning (P&lt;.001) and higher pain severity (P=.0448) than younger ones. Investigation of the HRQOL profile of patients by trial participation (i.e., AIDA 0493 vs. AIDA 2000) or time since diagnosis (cut-off median time of 13 years) revealed no difference in all scales of the SF-36. Fatigue was the most burdensome symptom being reported as moderate to severe in 35% of patients. Other frequently reported moderate to severe symptoms were: difficulty in remembering (30%), sadness and distress (29%). Conclusions Although ATRA plus anthracycline-based chemotherapy regimens have greatly increased cure rates in APL, the HRQOL of these patients is heavily affected by the consequences of the disease and treatment, that persists many years after diagnosis and treatment. Disclosures: No relevant conflicts of interest to declare.

Health Related Quality of Life of Long-Term Survivors of Acute Promyelocytic Leukemia Treated with All-Trans Retinoic Acid and Chemotherapy

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 2415-2415 ◽  
Author(s):  
Fabio Efficace ◽  
Franco Mandelli ◽  
Erika Borlenghi ◽  
Massimo Breccia ◽  
Alessandro Rambaldi ◽  
...  
Keyword(s):  
General Population ◽  
Symptom Burden ◽  
Trans Retinoic Acid ◽  
All Trans Retinoic Acid ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Long Term Survivors

Abstract Background: Combined treatment with all-trans retinoic acid (ATRA) and anthracycline-based chemotherapy regimens has remarkably contributed to improve treatment outcomes in patients with Acute Promyelocytic Leukemia (APL) patients leading to cure rates above 80%. However, information is lacking on how these patients might recover in the long-term period. Objective: The primary objective of this study was to investigate long-term health-related quality of life (HRQOL) and symptom burden in APL and to examine factors predicting better long-term HRQOL outcomes. Patients and Methods: Patients with APL treated within two large GIMEMA trials (i.e., AIDA0493 and AIDA 2000) were considered. All patients received ATRA plus Idarubicin (AIDA) for induction followed by consolidation that was risk-adapted in AIDA2000 and in most cases, maintenance for 2 years . The main inclusion criterion was having survived the initial diagnosis for more than 5 years and being in complete remission (CR) at the time of study inclusion. The SF-36 was used to assess generic HRQOL. This questionnaire consists of 36 items covering eight generic health status/QoL domains: physical functioning (PF), role limitations due to physical health (RP), bodily pain (BP), general health perceptions (GH), vitality (VT), social functioning (SF), role limitations due to emotional problems (RE) and mental health (MH). Mean SF-36 scores were compared between APL patients and those from general population. To minimize bias, all comparisons were performed between APL patients and corresponding propensity score-matched peers from general population, further adjusting for education, family status and geographical area using a multivariate linear mixed model. For descriptive purposes, a cut-off of 30 years was considered to distinguish between younger and older patients at the time of diagnosis and the corresponding HRQoL profiles were compared using multivariate linear regression analysis to adjust for key potential confounders. Also, M.D. Anderson Symptom Inventory (MDASI) was assessed to investigate the profile and prevalence symptom burden Results: Of the 307 patients, potentially eligible for this analysis and invited to participate in the study, 244 completed a HRQOL questionnaire (compliance 79.5%). No differences were found in the main socio-demographic and clinical characteristics between patients with or without a HRQOL evaluation. Mean age of patients was 52 years (range 20-90) and there were 47% males and 53% females. Median time from diagnosis was 14 years (range: 4-20). There were 81% of patients reporting at least 1 comorbidity at the time of HRQOL evaluation. APL long-term survivors reported a HRQOL profile broadly similar to that of their peers in the general population. However, the RP scale was statistically (P=0.016) and clinically meaningful worse in APL patients. Fatigue was the most prevalent symptom with 70% of patients reporting it with any level of concern, as well the most frequently reported moderate to severe symptom by 29 % of patients. Being distressed and problem with remembering things were the other two most prevalent symptoms reported by 65% and 62% of patients respectively. Being diagnosed at a younger age (<30 years) was a key factor associated with better long-term HRQOL outcomes. This was particularly relevant in physical health aspects. Detailed results of adjusted mean differences in SF-36 scores between age groups are reported in Table 1. Conclusions APL patients successfully treated with AIDA-like regimens may expect to have broadly similar HRQOL outcomes when compared to their peers witout cancer in the general population. However, significant limitations in work or other daily activities due to physical and emotional problems still persist after many years from diagnosis in the majority of patients. Our results also show that on the long-term period, younger APL patients recover better than older ones in terms of HRQOL outcomes. Disclosures Efficace: TEVA: Consultancy, Research Funding; Seattle Genetics: Consultancy; Bristol Myers Squibb: Consultancy; Lundbeck: Research Funding. Breccia:Novartis: Consultancy, Honoraria; Bristol Myers Squibb: Honoraria; Celgene: Honoraria; Ariad: Honoraria; Pfizer: Honoraria. Angelucci:Novartis oncology, celgene: Honoraria, Membership on an entity's Board of Directors or advisory committees. Lo Coco:Teva: Consultancy, Honoraria, Speakers Bureau; Lundbeck: Honoraria, Speakers Bureau; Novartis: Consultancy; Baxalta: Consultancy; Pfizer: Consultancy.

scholarly journals (A117) Outcomes and Quality of Life after Injury

2011 ◽  
Vol 26 (S1) ◽  
pp. s33-s33 ◽  
Author(s):  
J. Turner ◽  
J. Nicholl
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
The Mean ◽  
Injured Patients ◽  
The Impact

BackgroundMost research into the outcomes of injury has focused on mortality rather than the physical, social, and psychological sequelae of non-fatal injuries. The health and long-term outcomes of a cohort of accidentally-injured patients were studied in order to assess the impact on quality of life.MethodsThe cohort of patients was derived from six previous studies spanning 1988–2003. Patients were followed-up with to ascertain if they were still alive, and survivors were sent a follow-up questionnaire in 2006. The questionnaire asked about current problems resulting from past injuries, use of health services, and measures of health related quality of life (the EQ-5D and SF-36 or Nottingham Health Profile (NHP)). A sample of 114 also received detailed face-to-face interviews.ResultsA total of 2,418 patients were followed-up on between 4–15 years post-injury, of whom 311 had died. There were 580 completed follow-up questionnaires, and of these 64% reported health problems related to past injuries. The mean EQ-5D score at follow-up was 0.132 tariff points below the mean for a normal age-sex matched population, and SF-36 scores were 5–15 points worse than population norms. At all ages, EQ-5D and SF-36 scores were similar to those of the normal population aged 75. Interviewed patients also reported substantially more disability than the general population. Increasing injury severity was associated with almost all aspects of worse health at follow-up, and severe lower extremity injuries were strongly associated with poorer outcomes.ConclusionsInjured patients continue to experience significant reductions in health and health-related quality of life for many years after their injury.

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