To detect factors associated with quality of life (QOL) of patients with myelodysplastic syndrome (MDS) and to compare the MDS patients’ self-assessed QOL with that perceived by their physicians. In an observational, non-interventional, prospective, multicentre study, QOL was evaluated in 148 patients with newly diagnosed low- and intermediate-risk IPSS MDS. QOL measures (QOL-E v.2, LASA and EQ-5D) and patient-related candidate determinants of QOL were assessed for up to 18 months. Patients' QOL scores were compared with those obtained by appointed hematologists’ assessment and with ECOG performance status (PS). Fatigue was not prevalent at diagnosis, though physical QOL and energy levels were low. Transfusion-dependent patients had worse QOL scores. In multivariate analysis, Hb levels and comorbidities were a major determinant of QOL. Physicians’ perception of patients’ well-being correlated with patients’ QOL. Physicians underestimated the impact of disturbances on patients’ QOL, mainly in the MDS-specific components. ECOG PS did not discriminate patients according to QOL status. In conclusion, the association of anemia with QOL is confirmed, while co-morbidities emerge as an independent predictor of QOL in MDS. Fatigue is not a major concern. ECOG PS is not a valuable surrogate of patient’s QOL, thus highlighting that physician’s judgment of patient’s well-being must not substitute patient-reported outcomes. Appropriate questionnaires should be used to assess MDS patients’ QOL in order to improve communication and therapeutic choice.
Myelodysplastic syndromes; quality of life; comorbidities; anemia; transfusion-dependence; patient-reported outcomes
Accurate measurement of quality of life in older ICU survivors is difficult but critical for understanding the long-term impact of our treatments. Activities of daily living (ADLs) are important components of functional status and more easily measured than quality of life (QOL). We sought to determine the cross-sectional associations between disability in ADLs and QOL as measured by version one of the Short Form 12-item Health Survey (SF-12) at both one month and one year post-ICU discharge.
Data was prospectively collected on 309 patients over age 60 admitted to the Yale-New Haven Hospital Medical ICU between 2002 and 2004. Among survivors an assessment of ADL's and QOL was performed at one month and one-year post-ICU discharge. The SF-12 was scored using the version one norm based scoring with 1990 population norms. Multivariable regression was used to adjust the association between ADLs and QOL for important covariates.
Our analysis of SF-12 data from 110 patients at one month post-ICU discharge showed that depression and ADL disability were associated with decreased QOL. Our model accounted for 17% of variability in SF12 physical scores (PCS) and 20% of variability in SF12 mental scores (MCS). The mean PCS of 37 was significantly lower than the population mean whereas the mean MCS score of 51 was similar to the population mean. At one year mean PCS scores improved and ADL disability was no longer significantly associated with QOL. Mortality was 17% (53 patients) at ICU discharge, 26% (79 patients) at hospital discharge, 33% (105 patients) at one month post ICU admission, and was 45% (138 patients) at one year post ICU discharge.
In our population of older ICU survivors, disability in ADLs was associated with reduced QOL as measured by the SF-12 at one month but not at one year. Although better markers of QOL in ICU survivors are needed, ADLs are a readily observable outcome. In the meantime, clinicians must try to offer realistic estimates of prognosis based on available data and resources are needed to assist ICU survivors with impaired ADLs who wish to maintain their independence. More aggressive diagnosis and treatment of depression in this population should also be explored as an intervention to improve quality of life.
Definitions of time to deterioration in quality of life scores were examined as a modality of longitudinal quality of life assessment in breast cancer patients undergoing different surgical procedures, according to different cutoffs of the minimal clinically important difference.
This prospective multicenter study explored different definitions of time to deterioration (TTD) in quality of life (QoL) scores, according to different cutoffs of the minimal clinically important difference (MCID) as a modality for longitudinal QoL assessment in breast cancer patients.
QoL was assessed using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 and BR-23 before surgery, after surgery, and 6 and 12 months later. The global health score, arm symptoms score (BRAS), and breast symptoms score were analyzed. For a given baseline score, QoL was considered to have deteriorated if this score decreased by ≥5 points at any time point after baseline. Analyses were repeated using an MCID of 10 points and taking the score after surgery as the reference score (to explore the occurrence of response shift). TTD was calculated using the Kaplan–Meier method and Cox regression was used to identify independent factors associated with TTD.
Two hundred thirty-five patients underwent axillary lymph node dissection (ALND), 222 underwent sentinel lymph node biopsy (SLNB), and 61 underwent SLNB plus ALND. Patients who underwent SLNB had a significantly longer TTD for the BRAS dimension than those who underwent ALND. Cox multivariate analyses showed that treatment using SLNB and age >59 years were independently associated with longer TTD for the BRAS, whereas surgery elsewhere than at the Centre Georges François Leclerc was associated with a shorter TTD.
Exploration of different definitions of TTD in QoL provides meaningful longitudinal QoL results for clinicians.
Quality of life; Longitudinal analysis; Methodology; Breast cancer
Goals of work
This paper presents an observational study of the longitudinal effects of cancer treatment on quality of life (QoL) in patients treated for head and neck squamous cell carcinoma (HNSCC), and evaluated the contribution of patients' baseline illness cognitions to the prediction of QoL 2 years after diagnosis.
Patients and methods
One hundred seventy-seven patients eligible for primary treatment for HNSCC completed the Illness Perception Questionnaire-Revised at baseline and the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire-30 at baseline, at 1-year and 2-year follow-ups.
Compared to baseline, patients reported better emotional functioning at both follow-ups (p < 0.001), worse social functioning at 12 months (p < 0.05), and better global health status at 24 months (p < 0.05). Patients' own implicit common sense beliefs about their illness added small but significant amounts of variance to the prediction of QoL after 2 years. Less belief in own behavior causing the illness predicted better functioning and better global health. Strong illness identity beliefs predicted worse functioning and worse global health. Negative perceptions about the duration of the illness (chronic timeline beliefs) and more negative perceived consequences also predicted worse QoL.
Our results on the negative perceptions about the duration of the illness, perceived consequences, and high symptom awareness predicting worse QoL illustrate the detrimental effects of uncertainty and negative expectations about the future course of the illness. The identification of these cognitive factors provides possible targets for counseling strategies to assist patients in long-term adjustment to HNSCC.
Head and neck cancer; Oral oncology; Illness cognitions; Quality of life; Fear of recurrence (FoR) management
Quality of life (QoL) is an important outcome measure in clinical studies,
but interpretation is hindered by incompleteness of data. We addressed this
issue in a population-based cohort study of 146 patients with newly diagnosed
rectal cancer. QoL was assessed by means of European Organization for the
Research and Treatment of Cancer questionnaires at discharge from hospital
after primary treatment and then every 3 months for 2 years. In parallel,
objective clinical data were documented. Analyses were conducted in three
steps: participants versus non-participants with QoL-assessment; poor
compliers who filled in only one or two questionnaires (n=20) versus
good compliers who filled in all or nearly all questionnaires (n=18);
and the proportion of missing forms and critical (very poor) QoL scores in
risk patients versus non-risk patients over the course of 2 years.
Non-participants and poor compliers were older, were more likely to receive
palliative (rather than curative) treatment, and had worse scores for physical
status. Tumour progression and therapeutic interventions were more frequent in
poor compliers than in good-compliers. Patients with risk factors (age 475
years, poor physical status, palliative treatment) were more likely to have
missing questionnaires and critical QoL scores in respect of physical
functioning and global quality of life over the course of 2 years.
Missing values for QoL have clinical as well as methodological
implications, because QoL scores can enhance a clinician's insight.
Unwillingness to fill in a questionnaire is an indicator of serious illness.
Studies that report sample statistics without specifying compliance rates and
the characteristics of non-compliers will give a misleadingly positive
Few studies have used standardized QOL instruments to assess the quality of life (QOL) in Gilles de la Tourette Syndrome (GTS) patients. This work investigates the QOL of adult GTS patients and examines the relationships between physical and psychological variables and QOL.
Epidemiological investigation by anonymous national postal survey of QOL of patients of the French Association of Gilles de la Tourette Syndrome (AFGTS) aged 16 years or older. The clinical and QOL measures were collected by four questionnaires: a sociodemographic and GTS-related symptoms questionnaire, the World Health Organization Quality Of Life questionnaire (WHOQOL-26), the Functional Status Questionnaire (FSQ), and a self-rating questionnaire on psychiatric symptoms (SCL-90), all validated in French. We used stepwise regression analysis to explicitly investigate the relationships between physical and psychological variables and QOL domains in GTS.
Questionnaires were posted to 303 patients, of whom 167 (55%) completed and returned them. Our results, adjusted for age and gender, show that patients with GTS have a worse QOL than the general healthy population. In particular, the “Depression” psychological variable was a significant predictor of impairment in all WHOQOL-26 domains, psychological but also physical and social.
The present study demonstrates a strong relationship between QOL in GTS and psychiatric symptoms, in particular those of depression.
Gilles de la Tourette Syndrome; Quality of life; Physical and psychological health status; Psychology; Psychiatric disorders; Depression
A phase III trial (Cancer and Leukemia Group B CALGB-49907) was conducted to test whether older patients with early-stage breast cancer would have equivalent relapse-free and overall survival with capecitabine compared with standard chemotherapy. The quality of life (QoL) substudy tested whether capecitabine treatment would be associated with a better QoL than standard chemotherapy.
Patients and Methods
QoL was assessed in 350 patients randomly assigned to either standard chemotherapy (cyclophosphamide, methotrexate, and fluorouracil [CMF] or doxorubicin and cyclophosphamide [AC]; n = 182) or capecitabine (n = 168). Patients were interviewed by telephone before treatment (baseline), midtreatment, within 1 month post-treatment, and at 12, 18, and 24 months postbaseline by using questionnaires from the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 (EORTC QLQ-C30), a breast systemic adverse effects scale (EORTC BR23), and the Hospital Anxiety and Depression Scale (HADS).
Compared with patients who were treated with standard chemotherapy, patients who were treated with capecitabine had significantly better QoL, role function, and social function, fewer systemic adverse effects, less psychological distress, and less fatigue during and at the completion of treatment (P ≤ .005). Capecitabine treatment was associated with less nausea, vomiting, and constipation and with better appetite than standard treatment (P ≤ .004), but worse hand-foot syndrome and diarrhea (P < .005). These differences all resolved by 12 months.
Standard chemotherapy was superior to capecitabine in improving relapse-free and overall survival for older women with early-stage breast cancer. Although capecitabine was associated with better QoL during treatment, QoL was similar for both groups at 1 year. The brief period of poorer QoL with standard treatment is a modest price to pay for a chance at improved survival.
Few data exist on survival or health-related quality of life (QOL) related to herbal remedy use among long-term breast cancer survivors. The objective of this report is to examine whether herbal remedy use is associated with survival or the health-related QOL of these long-term breast cancer survivors.
In 1999-2000, we collected the information of herbal remedy use and QOL during a telephone interview with 371 Los Angeles Non-Hispanic/Hispanic white women who had survived more than 10 years after breast cancer diagnosis. QOL was measured using the Medical Outcomes Study Short Form-36 (SF-36) questionnaire. Patients were followed for mortality from the baseline interview through 2007. 299 surviving patients completed a second telephone interview on QOL in 2002-2004. We used multivariable Cox proportional hazards methods to estimate relative risks (RR) and 95% confidence intervals (CI) for mortality and applied multivariable linear regression models to compare average SF-36 change scores (follow-up - baseline) between herbal remedy users and non-users.
Fifty-nine percent of participants were herbal remedy users at baseline. The most commonly used herbal remedies were echinacea, herbal teas, and ginko biloba. Herbal remedy use was associated with non-statistically significant increases in the risks for all-cause (44 deaths, RR = 1.28, 95% CI = 0.62-2.64) and breast cancer (33 deaths, RR = 1.78, 95% CI = 0.72-4.40) mortality. Both herbal remedy users' and non-users' mental component summary scores on the SF-36 increased similarly from the first survey to the second survey (P = 0.16), but herbal remedy users' physical component summary scores decreased more than those of non-users (-5.7 vs. -3.2, P = 0.02).
Our data provide some evidence that herbal remedy use is associated with poorer survival and a poorer physical component score for health-related QOL among women who have survived breast cancer for at least 10 years. These conclusions are based on exploratory analyses of data from a prospective study using two-sided statistical tests with no correction for multiple testing and are limited by few deaths for mortality analysis and lack of information on when herbal remedy use was initiated or duration of or reasons for use.
herb; breast cancer; survival; mortality; QOL
The use of quality of life measures (QOL) in substance abuse treatment research is important because it may lead to a broader understanding of patients’ health status and effects of interventions. Despite the high rates of comorbid cocaine and alcohol use disorders, little is known about the QOL of this population, and even less about the impact of an efficacious behavioral treatment, contingency management (CM), on QOL. In this study, data from three clinical trials were retrospectively analyzed to examine QOL in outpatient cocaine abusers with and without alcohol dependence (AD) and the impact of CM on QOL over time as a function of AD status. Patients were randomized to standard care (n = 115) or standard care plus CM (n = 278) for 12 weeks. QOL was assessed at baseline and Months 1, 3, 6, and 9. At treatment initiation, AD patients had lower QOL total scores and they scored lower on several subscale scores than those without AD. CM treatment was associated with improvement in QOL regardless of AD status. These data suggest that CM produces benefits that go beyond substance abuse outcomes, and they support the use of QOL indices to capture information related to treatment outcomes.
quality of life; cocaine; alcohol dependence; substance abuse treatment; contingency management
Co-morbidity is a common phenomenon in the elderly and is considered to be a major threat to quality of life (QOL). Knowledge of co-existing conditions or patient characteristics that lead to an increased QOL decline is important for individual care, and for public health purposes. In visually impaired older adults, it remains unclear which co-existing conditions or other characteristics influence their health-related QOL. Our aim was to present a risk profile of characteristics and conditions which predict deterioration of QOL in visually impaired older patients.
Analyses were performed on data from an observational study among 296 visually impaired older patients from four Dutch hospitals. QOL was measured with the EuroQol-5D (EQ-5D) at baseline and at five-month follow-up. Nine co-existing condition categories (musculoskeletal; diabetes; heart; hypertension; chronic obstructive pulmonary disease (COPD) or asthma; hearing impairment; stroke; cancer; gastrointestinal conditions) and six patient characteristics (age; gender; visual acuity; social status; independent living; rehabilitation type) were tested in a linear regression model to determine the risk profile. The model was corrected for baseline EQ-5D scores. In addition, baseline EQ-5D scores were compared with reference scores from a younger visually impaired population and from elderly in the general population.
From the 296 patients, 50 (16.9%) were lost to follow-up. Patients who reported diabetes, COPD or asthma, consequences of stroke, musculoskeletal conditions, cancer, gastrointestinal conditions or higher logMAR Visual Acuity values, experienced a lower QOL. After five months, visual acuity, musculoskeletal conditions, COPD/asthma and stroke predicted a decline in QOL (R2 = 0.20). At baseline, the visually impaired older patients more often reported moderate or severe problems on most EQ-5D dimensions than the two reference groups.
In visually impaired older patients, visual acuity, musculoskeletal conditions, COPD/asthma and stroke predicted a relatively rapid decline in health-related QOL. With this risk profile, a specific referral by the ophthalmologist to another sub-specialty may have a beneficial effect on the patient's health-related QOL. A referral by the ophthalmologist or optometrist to a multidisciplinary rehabilitation service seems appropriate for some patients with co-morbidity. The current results need to be confirmed in studies using pre-structured questionnaires to assess co-morbidity.
To examine the association of quality of life (QOL) after diagnosis of breast cancer with mortality and recurrence.
Patients and Methods
From 2002 to 2004, a total of 2,230 breast cancer survivors completed the General Quality of Life Inventory-74 6 months after diagnosis as part of the Shanghai Breast Cancer Survivor Study. Also collected at baseline was information on demographic and clinical characteristics. At 36 months postdiagnosis, 1,845 of these women were re-evaluated for QOL. Outcomes were ascertained by in-person interview and record linkage to the vital statistics registry. The association of QOL with total mortality and cancer recurrence was assessed by using Cox regression analysis.
During a median follow-up of 4.8 years after the 6-month postdiagnosis QOL assessment, 284 deaths were identified. Recurrence was documented in 267 patients after 108 patients with stage IV breast cancer or recurrence before study enrollment were excluded. Women with the highest tertile of social well-being QOL score, compared with those with the lowest score, had a 38% decreased risk of mortality (95% CI, 0.46 to 0.85; P for trend = .002) and a 48% decreased risk of breast cancer recurrence (95% CI, 0.38 to 0.71; P for trend < .001). QOL assessed at 36 months postdiagnosis was not significantly associated with subsequent risk of mortality or recurrence.
Social well-being in the first year after cancer diagnosis is a significant prognostic factor for breast cancer recurrence or mortality, suggesting a possible avenue of intervention by maintaining or enhancing social support for women soon after their breast cancer diagnosis to improve disease outcomes.
To describe long-term changes in time of quality of life (QOL) and the relation with parotid salivary output in patients with head-and-neck cancer treated with radiotherapy.
Forty-four patients completed the EORTC-QLQ-C30(+3) and the EORTC-QLQ-H&N35 questionnaires before treatment, 6 weeks, 6 months, 12 months, and at least 3.5 years after treatment. At the same time points, stimulated bilateral parotid flow rates were measured.
There was a deterioration of most QOL items after radiotherapy compared with baseline, with gradual improvement during 5 years follow-up. The specific xerostomia-related items showed improvement in time, but did not return to baseline. Global QOL did not alter significantly in time, although 41% of patients complained of moderate or severe xerostomia at 5 years follow-up. Five years after radiotherapy the mean cumulated parotid flow ratio returned to baseline but 20% of patients had a flow ratio <25%. The change in time of xerostomia was significantly related with the change in flow ratio (p = 0.01).
Most of the xerostomia-related QOL scores improved in time after radiotherapy without altering the global QOL, which remained high. The recovery of the dry mouth feeling was significantly correlated with the recovery in parotid flow ratio.
To determine the role of human papillomavirus (HPV) status on quality of life (QOL) in patients with oral cavity and oropharyngeal squamous cell carcinoma (OSCC). Since OSCC that are associated with high-risk HPV have an improved response to treatment and survival, we hypothesized that patients with these tumors would have better QOL trajectories.
Prospective cohort study.
Tertiary care academic medical center and two affiliated hospitals.
Subjects and Methods
Head and neck-specific QOL was determined using the University of Washington Quality of Life (UW-QOL) scale version 4 in patients with newly diagnosed invasive OSSC (n=228).
Pre-treatment QOL was higher in patients with high-risk HPV-associated tumors compared to patients with HPV-negative or low-risk HPV-associated tumors (p=0.015). Patients with high-risk HPV-associated tumors had larger decreases in QOL from pre-treatment to immediate post-treatment compared to patients with HPV-negative or low-risk HPV-associated tumors (p=0.041). There was no association between HPV status and one year post-treatment QOL.
Among OSCC patients, high-risk HPV-associated tumors were associated with higher pre-treatment QOL and a larger decrease in QOL from pre-treatment to immediate post-treatment, suggesting that treatment intensity in this unique population may adversely affect QOL.
head and neck cancer; quality of life; epidemiology/outcomes research; head and neck surgery; human papillomavirus; oropharyngeal squamous cell carcinoma
OBJECTIVE: The aim was to assess the psychosocial effects on the quality of life (QOL) of adults with head and neck cancer (HNC) and any gender variations with predictive factors that may influence QOL. PATIENTS AND METHODS: This was a three-month descriptive and prospective evaluation of QOL in 50 adult patients with HNC who were still on treatment but had spent a period of at least four weeks from commencement in a tertiary hospital. MAIN OUTCOME RESULTS: There were 32 males and 18 females with a mean age of 47.74 years. Females had higher mean scores than males in all domains except pain domain, global and general questions. There was no significant difference in the mean score between the genders in all the domains: overall bother, overall satisfaction, response to treatment, site with QOL and health-related QOL (HRQOL). Pain domain correlated significantly with eating and emotion but weakly with stage of the disease. The predictive factor for overall bother was mainly emotion domain, while site of lesion with QOL was for overall satisfaction, response to treatment and HRQOL. CONCLUSIONS: Pain, which is a major problem experienced by these patients with HNC, requires more attention by the caregiver in order to improve their QOL.
There are conflicting and inconsistent results in the literature on the prognostic role of quality of life (QoL) in cancer. We investigated whether QoL at admission could predict survival in lung cancer patients.
The study population consisted of 1194 non-small cell lung cancer patients treated at our institution between Jan 2001 and Dec 2008. QoL was evaluated using EORTC-QLQ-C30 prior to initiation of treatment. Patient survival was defined as the time interval between the date of first patient visit and the date of death from any cause/date of last contact. Univariate and multivariate Cox regression evaluated the prognostic significance of QoL.
Mean age at presentation was 58.3 years. There were 605 newly diagnosed and 589 previously treated patients; 601 males and 593 females. Stage of disease at diagnosis was I, 100; II, 63; III, 348; IV, 656; and 27 indeterminate. Upon multivariate analyses, global QoL as well as physical function predicted patient survival in the entire study population. Every 10-point increase in physical function was associated with a 10% increase in survival (95% CI = 6% to 14%, p < 0.001). Similarly, every 10-point increase in global QoL was associated with a 9% increase in survival (95% CI = 6% to 11%, p < 0.001). Furthermore, physical function, nausea/vomiting, insomnia, and diarrhea (p < 0.05 for all) in newly diagnosed patients, but only physical function (p < 0.001) in previously treated patients were predictive of survival.
Baseline global QoL and physical function provide useful prognostic information in non-small cell lung cancer patients.
To examine quality of life (QoL) measured by a utility-weighted index in GH-deficient adults on GH replacement and analyse the impact of demographic and clinical characteristics on changes in utilities during treatment.
Utilities for items in the QoL-Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDAutility) were estimated based on data obtained from the general population in England and Wales (E&W). These estimates were used to calculate QoL changes in GH-treated patients and compare these with normative population values.
A total of 894 KIMS patients (53% women) from E&W were followed for 1 to 6 years.
QoL-AGHDAutility at baseline and at the last reported visit, total QoL-AGHDAutility gain and QoL-AGHDAutility gain per year of follow-up.
QoL-AGHDAutility in patients before GH treatment differed from the expected population values [0·67 (SD 0·174) vs. 0·85 (SD 0·038), P < 0·0001], constituting a mean deficit of –0·19 (SD 0·168). There was a difference in the mean QoL-AGHDAutility deficit for men [–0·16 (SD 0·170)] and women [–0·21 (SD 0·162)] (P < 0·001). The main improvement occurred during the first year of treatment [reduction of a deficit to –0·07 (SD 0·163) (P < 0·001) in the total cohort]; however, patients’ utilities remained lower than those recorded for the general population during subsequent follow-up (P < 0·001). Despite an observed impact of age, primary aetiology, disease onset and comorbidities on QoL-AGHDAutility, all patients showed a similar beneficial response to treatment.
QoL-AGHDAutility efficiently monitors treatment effects in patients with GHD. The study confirmed the QoL-AGHDAutility deficit before treatment and a similar QoL-AGHDAutility gain observed after commencement of GH replacement in all patients.
The objective of this study was to develop a reliable, validated disease-specific score measuring quality of life (QOL) in clinical practice and treatment trials in Neurofibromatosis 2 (NF2) individuals. In NF2 patients, qualitative interviews (n = 15) and a focus group session (n = 30) generated items for a pilot questionnaire. This was tested and refined (n = 20). The final version (NFTI-QOL) was validated (n = 50) with two generic QOL questionnaires (SF-36 and EuroQOL). The NFTI-QOL was also administered to patients with solitary vestibular schwannoma (SVS) (n = 30) and normal controls (n = 30). The participants were NF2 patients, SVS patients, and normal controls. NFTI-QOL score, SF-36 score, and EuroQOL score were the main outcome measures. Mean NFTI-QOL score was 9.4 (range: 0 to 20, maximum possible score = 24). The NFTI-QOL score correlated strongly with EuroQOL (r = 0.71, p < 0.001) and SF-36 (r = 0.81, p < 0.001). NF2 individuals were significantly worse than the SVS patients, who in turn were worse than the controls on the NIFTI-QOL. The NFTI-QOL showed good internal reliability (Cronbach's α = 0.87). We developed an eight-item disease-specific QOL score for NF2 patients, validated against SF-36 and EuroQOL. It correlated strongly with clinician-rated disease severity in NF2, with better correlation than the SF-36 in this regard.
NFTI-QOL; quality of life; neurofibromatosis 2; vestibular schwannoma; SF-36; EuroQOL
To develop and evaluate a new instrument that measures aspects of long-term survivorship not measured by existing tools.
In qualitative interviews, 47 long-term cancer survivors (LTS) detailed ways that cancer has impacted their lives. Content analysis resulted in the creation of 325 candidate items for inclusion in a new Impact of Cancer (IOC) instrument. Following expert review, item reduction and pilot testing, 81 items were administered with other established health status and quality of life (QOL) instruments to 193 LTS of breast, prostate, colorectal cancers and lymphoma. Internal consistency reliability and validity of newly-derived scales was assessed.
Factor analysis of items using a priori QOL domains resulted in the derivation of ten new and specific subscales: health awareness, body changes, health worries, positive and negative self-evaluation, positive and negative life outlook, social life interferences, relationships, and meaning of cancer. Internal consistency measurements for these subscales ranged from 0.67 to 0.89. Expected associations within and among the IOC subscales and standardized measures of health status and QOL were observed, as were some unexpected findings.
Psychometric analysis indicated that this initial version of the Impact of Cancer instrument measures distinct and relevant constructs for LTS. Future work is necessary to confirm the factor structure, responsiveness and further validation of the instrument.
Cancer survivors; Instrument development; Psychometric testing; Quality of life
Previous national and international studies of quality of life (QoL) in patients with skin diseases have revealed different levels of QoL impairment. The aims of this study were to assess QoL in patients with skin diseases in central Saudi Arabia using the newly validated Skindex-16 instrument and to determine the association between QoL in patients with skin disease, sociodemographic data, and disease characteristics.
A cross-sectional study was conducted in 283 adult patients who visited the outpatient dermatology clinics of King Abdulaziz Medical City, Riyadh, Saudi Arabia, over 3 months. The patients were interviewed using a pretested Arabic version of the Skindex-16 to measure the effect of skin disorders on their QoL during the previous 7 days. Patient characteristics, medical history, and clinical findings were collected. Multiple linear regression analyses were used to relate the demographic and clinical characteristics to the percentage mean QoL score, and P ≤ 0.05 was considered to be statistically significant.
QoL was good in 69% of the respondents, with a total percent mean score of 31.80 ± 20.16. The emotional domain was the most affected (mean percentage score 44.27 ± 27.06), followed by symptoms (31.45 ± 28.40) and functioning (14.61 ± 22.75). After adjustment for potential confounders, poorer QoL was significantly associated with female gender (P = 0.03), older age (P = 0.003), rural origin (P = 0.03), positive family history of the same lesion(s) (P = 0.01), shorter duration of ≤6 months (P = 0.02), generalized spread (P ≤ 0.02), and lack of isotretinoin treatment (P = 0.02).
. The QoL results in this study were generally more optimistic than those of many previous studies. This discrepancy may be due to biases in questionnaire responses or to cultural differences in experience of skin disease and perception of disability. Significant predictors of QoL were not the same for the three domains of the Skindex scale. Further studies of specific diseases and educational programs targeting patients at higher risk for QoL impairments are recommended.
quality of life; skin disease; Saudi Arabia
To establish the clinical responsiveness of the Skin Cancer Index (SCI), a new disease-specific quality of life (QOL) instrument, and to assess demographic and clinical factors which impact QOL in patients with nonmelanoma skin cancer (NMSC).
Prospective study of 183 patients with NMSC of the face and neck referred to a tertiary care Mohs surgery clinic.
The SCI is a 15 item, validated, disease-specific QOL instrument with 3 distinct subscales, Emotion, Social, and Appearance. Higher scores reflect better QOL. The SCI and the Dermatology Life Quality Index (DLQI), a general dermatology instrument, was administered at initial consultation and 4 months after surgical treatment. Multivariate analysis was conducted to assess demographic and clinical factors predictive of QOL for both instruments.
The SCI total score and all three subscale scores increased with treatment, demonstrating strong evidence of responsiveness over time (P < .001) in contrast with the DLQI (P = .46). Predictors of poorer QOL for the SCI included female sex and cancers located on the lip. Patients who demonstrated greatest improvement in QOL with treatment included those who were younger (< 50 yr) and had lower reported household income. Also, first time NMSC patients and those patients who underwent less extensive reconstructions demonstrated greater improvements in QOL.
The SCI is a sensitive and responsive QOL instrument for patients with NMSC. Distinct demographic and clinical variables that impact QOL have been demonstrated using this multidimensional, disease-specific instrument.
Skin cancer; quality of life; basal cell cancer; squamous cell cancer
This paper describes the development of the Chinese Quality of Life Instrument (ChQOL) which is a self-report health status instrument. Chinese Medicine relies very much on asking subjective feelings of patients in the process of diagnosis and monitoring of treatment. For thousands of years, Chinese Medicine practitioners have accumulated a good wealth of experiences in asking questions about health of their patients based on the concept of health in Chinese Medicine. These experiences were then transformed into questions for the ChQOL. It is believed that ChQOL can contribute to the existing Patient Report Outcome measures. This paper outlines the concept of health and disease in Traditional Chinese Medicine, the building of the conceptual framework of the ChQOL, the steps of drafting, selecting and validating the items, and the psychometric properties of the ChQOL.
The development of the ChQOL was based on the concept of health in Traditional Chinese Medicine with a theory driven approach. Based on the results of literature review, the research team developed an initial model of health which encompassed the concept of health in TCM. An expert panel was then invited to comment and give suggestions for improvement of the initial model. According to their suggestions, the model was refined and a set of initial items for the ChQOL was drafted. The refined model, together with the key domains, facets and initial items of the ChQOL were then mailed to a sample of about 100 Chinese medicine practitioners throughout Mainland China for their comments and advice. A revised set of items were developed for linguistic testing by a convenience sample consisting of both healthy people and people who attended Chinese Medicine treatment. After that, an item pool was developed for field-testing. Field test was conducted on a convenience sample of healthy and patient subjects to determine the construct validity and psychometric properties of the ChQOL.
Construct validity was established by various methods, i.e. the internal consistency in all facets and domains were good; the correlation between facets to domain, and domains to overall ChQOL correlation were high; confirmatory factor analysis showed that the structure fitness of all facets, domain and overall structure were good with CFI > 0.9. Test-retest reliability was also good, especially in the domain scores with ICC value ranging from 0.83 to 0.90. No ceiling or floor effect was noted which indicated that ChQOL can be applied to subjects with a wide range of health status. Most facet scores, domain scores and the overall CHQOL scores were able to discriminate groups of subjects with known differences in health status. The ChQOL had mild positive convergence with the other generic health related QOL measures, i.e. the WHOQOL-100 and the SF-36, with moderate correlations.
In conclusion, the study indicated that the ChQOL is conceptually valid with satisfactory psychometric properties. It can provide additional information on health and QOL on top of the existing generic health related QOL measures. Furthermore, it forms basis for further testing and applications in clinical trials.
Quality of life; self-reported health status; theory driven approach; Ying-yang, structure fitness, validation, psychometric properties; the Chinese Quality of Life instrument
In spite of consistent evidence to suggest that being more physically active is associated with enhanced quality of life (QOL), there have been remarkably few attempts to determine the possible underlying mechanisms in this relationship.
To prospectively examine the roles played by self-efficacy and physical and mental health status in the physical activity and quality of life relationship in older women.
Older women (M age = 68.12 years) completed measures of physical activity, self-efficacy relative to balance, mental and physical health status, and global QOL at baseline (N = 249) and 24-month follow-up (N = 217). Demographics and general health information were assessed at baseline. A panel analysis within a covariance modeling framework was used to analyze the data.
Analyses indicated that changes in physical activity over time were associated with residual changes in self-efficacy. Changes in self-efficacy were significantly associated with residual changes in physical and mental health status. Only changes in mental health status were significantly related to residual changes in global QOL.
Results from this study support the role of self-efficacy in the relationship between physical activity and QOL. Future physical activity promotion programs should include strategies to enhance self-efficacy for physical activity to be most effective for this population.
Several studies have demonstrated the predictive significance on survival of baseline quality of life (QoL) in colorectal cancer (CRC) with little information on the impact of changes in QoL scores on prognosis in CRC. We investigated whether changes in QoL during treatment could predict survival in CRC.
We evaluated 396 stages III-IV CRC patients available for a minimum follow-up of 3 months. QoL was evaluated at baseline and after 3 months of treatment using EORTC QLQ-C30. Cox regression evaluated the prognostic significance of baseline, 3-month and changes in QoL scores after adjusting for age, gender and stage at diagnosis.
After adjusting for covariates, every 10-point increase in both baseline appetite loss and global QoL score was associated with a 7% increased risk of death with HR = 1.07 (95% CI, 1.01-1.14; P = 0.02) and (HR = 0.93 (95% CI, 0.87-0.98; P = 0.01) respectively. A lower risk of death was associated with a 10-point improvement in physical function at 3 months (HR, 0.86; 95% CI, 0.78-0.94; P = 0.001). Surprisingly, a higher risk of death was associated with a 10-point improvement in social function at 3 months (HR, 1.08; 95% CI, 1.02-1.13; P = 0.008).
This study provides preliminary evidence to indicate that CRC patients whose physical function improves within 3 months of treatment have a significantly increased probability of survival. These findings should be used in clinical practice to systematically address QoL-related problems of CRC patients throughout their treatment course.
The newly emerging practice of Pharmaceutical Care requires that pharmacists take responsibility for the outcomes of drug therapy. Improvement in Quality of Life (QoL) represents the final outcome of the care process and indicates the success of interventions.
To assess the impact of a Pharmaceutical Care specialist asthma service provided by community pharmacists to a sample of patients with asthma, the outcome indicators being changes in health status and QoL.
Sixty-two adult asthma patients (17 years and older) living in two rural regions of New Zealand, were segregated into two groups for phased introduction to the service. The patients acted as their own controls before they received the pharmacists’ service. They had been diagnosed with asthma at least six months previously, and their asthma was symptomatic and not considered optimally controlled prior to the study.
There was significant improvement in asthma-related QoL (as measured by the Asthma Quality of Life Questionnaire) following introduction of the service, and pharmacists were able to identify, prevent or resolve over 400 drug-related problems.
The results suggest that with appropriate training and support, New Zealand pharmacists can help asthma patients achieve greater quality of life. This research has implications for the introduction of Pharmaceutical Care services in other countries and for patients with other conditions who require ongoing management.
Pharmaceutical Care; Quality of Life; asthma; pharmacists
Background and study aims
The impact of the diagnosis and treatment of dysplastic Barrett’s esophagus (BE) on quality of life (QoL) is poorly understood. This study assessed the influence of dysplastic BE on QoL and evaluated if endoscopic treatment of dysplastic BE with radiofrequency ablation (RFA) improves QoL.
Patients and methods
We analyzed changes in QoL in the AIM Dysplasia Trial—a multicenter study of patients with dysplastic BE randomized to RFA therapy or a sham intervention. We developed a 10-item questionnaire to assess the influence of dysplastic BE on QoL. The questionnaire was completed by subjects at baseline and 12 months.
One hundred and twenty-seven patients were randomized to RFA (n=84) or sham (n=43). At baseline, the majority of subjects reported esophageal cancer worry (71% RFA, 85% sham) and esophagectomy worry (61% RFA, 68% sham). Subjects reported depression, impaired QoL, worry, stress and dissatisfaction with the condition of their esophagus. Of those randomized, 117 subjects completed the 12 month endpoint. Compared to sham, subjects treated with RFA had significantly reduced esophageal cancer worry (p=0.003) and esophagectomy worry (p=0.009). They also had significantly reduced depression (p=0.02), general worry with the condition of their esophagus (p≤0.001), impact on daily QoL (p=0.009), stress (p=0.03), dissatisfaction with the condition of their esophagus (p≤0.001) and impact on work and family life (p=0.02).
Inclusion in the treatment group of this randomized, sham-controlled trial of RFA was associated with improvement in disease-specific health-related quality of life. This improvement appears secondary to a perceived decrease in the risk of cancer.