Quality of Life Research (QUAL LIFE RES)

Publications in this journal

• Article: Informatively missing quality of life and unmet needs sexual data for immigrants and Anglo-Australians

  Bell ML, Butow PN, Goldstein D
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  ABSTRACT: Purpose Although cancer can seriously affect peoples’ sexual well-being, survivors and patients may be reluctant to answer questions about sex. This reluctance may be stronger for immigrants. This study aimed to investigate missing sex data rates and predictors of missingness in two large studies on immigrants and Anglo-Australian controls with cancer and to investigate whether those with missing sex data may have worse sexual outcomes than those with complete data. Methods We carried out two studies aimed at describing the quality of life (QoL) and unmet needs amongst Arabic, Chinese and Greek immigrants versus Anglo-Australians cancer survivors (n = 596, recruited from cancer registries) and patients (n = 845). Logistic regression was used to model the probability of having missing sex data in either of the questionnaires. We compared the mean of the unmet sex needs responses of those who had missing QoL sex data (but not needs) to those who had completed both, and vice versa. Results Missing sex data rates were as high as 65 %, with immigrants more likely to skip sex items than Anglo-Australians (p = 0.02 for registry study, p < 0.0001 for hospital study). Women, older participants and participants with more advanced disease had increased odds of missingness. There was evidence that data were informatively missing. Additionally, the questionnaire which stated that the sex questions are optional had higher missing data rates. Conclusion High missing data rates and informatively missing data can lead to biased results. Using the questionnaires that state that they may skip sex items may lead to an underestimation of sexual problems or an overestimation of quality of life.
  Quality of Life Research 04/2013;
• Article: Psychometric evaluation of the EORTC computerized adaptive test (CAT) fatigue item pool

  Morten Aa. Petersen, Johannes M. Giesinger, Bernhard Holzner, Juan I. Arraras, Thierry Conroy, Eva-Maria Gamper, Madeleine T. King, Irma M. Verdonck-de Leeuw, Teresa Young, Mogens Groenvold, on behalf of the EORTC Quality of Life Group
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  ABSTRACT: Purpose: Fatigue is one of the most common symptoms associated with cancer and its treatment. To obtain a more precise and flexible measure of fatigue the EORTC Quality of Life Group has developed a computerized adaptive test (CAT) measure of fatigue. This is part of an ongoing project developing a CAT version of the widely used EORTC QLQ-C30 questionnaire. Methods: Based on literature search and evaluations by experts and patients 41 new fatigue items were developed (in addition to the three QLQ-C30 fatigue items). Psychometric properties of the items, including evaluations of dimensionality, fit to item response theory (IRT) model, and differential item functioning (DIF), were assessed in an international sample of cancer patients. Results: Responses were obtained from 1321 cancer patients coming from eight countries. Factor analysis showed that 37 of the items could be included in a unidimensional model (RMSEA=0.098, TLI=0.995, CFI=0.920). Of the 37 items, two were deleted because of poor fit to the IRT model forming the basis for the CAT, and one because of DIF between cancer sites. Conclusions: We have established a 34-item fatigue bank allowing for more precise and flexible measurement of fatigue, while still being backward compatible with the QLQ-C30 fatigue scale.
  Quality of Life Research 02/2013; In Press.
• Article: Axial rigidity and quality of life in patients with Parkinson’s disease: a preliminary study

  Roberto Cano-de-la-Cuerda, Lydia Vela-Desojo, Juan Carlos Miangolarra-Page, Yolanda Macías-Macías, Elena Muñoz-Hellín
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  ABSTRACT: PurposeRigidity is a cardinal symptom of Parkinson’s disease (PD) and is often clinically assessed by passively flexing and extending a patient’s limb. Objective measurements had been employed to examine rigidity in PD subjects, including wrist, elbow, knee and trunk. This study aimed to investigate the relationship between an objective measurement of trunk rigidity and health-related quality of life (HRQoL) and functional status in patients with mild to moderate PD. MethodsAn isokinetic dynamometer Biodex System 3 was employed to assess trunk rigidity in 36 PD patients. HRQoL was assessed with the EuroQol-5D and Parkinson’s Disease Questionnaire-39 items (PDQ-39). Functional status was measured with the Schwab and England scale. ResultsTrunk rigidity was correlated with the HRQoL assessed with the mobility, cognition and stigma PDQ-39 domains and the total PDQ-39 scores. No correlations were found among trunk muscle tone assessed with the isokinetic dynamometer and the EuroQoL-5D. Functional status was correlated with the trunk extensors rigidity at all angular velocities. ConclusionThe results from this study suggest that the axial motor impairments impact on QoL and functional status in patients with PD. Further studies are needed with quantitative devices for axial rigidity assessment to determine the relationship between trunk rigidity in PD patients with higher disease severity and HRQoL scales. KeywordsParkinson’s disease–Rigidity–Objective measurement–Trunk–Quality of life
  Quality of Life Research 05/2012; 20(6):817-823.
• Article: What level of IBS symptoms drives impairment in health-related quality of life in community subjects with irritable bowel syndrome?

  Natasha A. Koloski, Philip M. Boyce, Michael P. Jones, Nicholas J. Talley
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  ABSTRACT: BackgroundQuality of life is impaired in some people with IBS, but the level of symptoms that may drive this impairment is unclear. AimsWe aimed to identify whether current frequency and severity cut-offs for IBS-type symptoms are associated with a clinically meaningful impairment of quality of life in the community. MethodsPeople who met modified Rome III criteria for IBS (n=201) and controls (n=1,904) were assessed. Frequency of IBS symptoms was grouped a priori into ‘less frequent’ (not at all and sometimes) and ‘more’ frequent (often, very often and almost always). Severity of abdominal pain was grouped into ‘mild’ (very mild and mild) and severe (moderate, severe and very severe). Mental and physical functioning was measured using the valid SF-12, with ‘normal’ functioning (defined as a score of >43 and >48) and ‘impaired’ functioning (defined as a score of ≤43 and ≤48), respectively. Psychological variables were assessed via valid self-report. ResultsHaving ‘more’ versus ‘less’ severe abdominal pain (OR=9.41; 95% CI 1.17–75.43, P=0.03) and ‘more’ versus ‘less’ frequent diarrhoea (OR=2.19; 95% CI 1.13–4.26, P=0.02) along with increasing age (OR=1.03; 95% CI 1.01–1.05, P=0.003) were significant independent predictors of having impairment in physical functioning. In terms of psychological factors, having higher levels of depression (OR=1.61; 95% CI 1.36–1.91) and somatic distress (OR=1.17; 95% CI 1.09–1.27) were independently associated with mental and physical impairment, respectively. ConclusionThe current frequency and severity threshold cut-offs for IBS symptoms in the Rome III criteria are associated with a clinically meaningful impairment of quality of life in community subjects with IBS. KeywordsQuality of life–Irritable bowel syndrome–Rome criteria
  Quality of Life Research 05/2012;
• Article: Validation of the Japanese translation of the Swallowing Disturbance Questionnaire in Parkinson’s disease patients

  Toshiyuki Yamamoto, Kensuke Ikeda, Harumi Usui, Masako Miyamoto, Miho Murata
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  ABSTRACT: PurposeThe Swallowing Disturbance Questionnaire (SDQ) was developed as a self-rated screening tool for dysphagia in patients with Parkinson’s disease (PD). We developed the Japanese version of this questionnaire (SDQ-J), according to the cross-cultural adaptation guidelines, and examined its reliability. MethodsSubjects were 61 Japanese patients with PD (mean age, 67.0±9.2years) who answered the SDQ-J before undergoing videofluoroscopic examination of swallowing (VF). We compared the findings of the questionnaire with the patients’ aspiration status during VF. ResultsCronbach’s alpha coefficient for the 15 questions of the SDQ-J was 0.84. According to the SDQ-J, 15 patients (24.6%) were diagnosed with dysphagia, while 9 patients (14.8%) aspirated liquid during VF. The sensitivity and specificity of the SDQ-J in predicting aspiration were 77.8 and 84.6%, respectively; therefore, the SDQ-J significantly predicted aspiration during VF (P<0.01). The positive predictive value (PPV) and negative predictive value (NPV) for the SDQ-J were 0.46 and 0.96, respectively. ConclusionsThe SDQ-J appears to be a reliable and useful screening tool for Japanese PD patients with aspiration. As the NPV was higher than the PPV in the SDQ-J, this questionnaire could potentially be used for early identification of severe dysphagia in patients with PD. KeywordsParkinson’s disease–Dysphagia–Questionnaires–Fluoroscopy
  Quality of Life Research 04/2012;
• Article: Self-report fatigue questionnaires in multiple sclerosis, Parkinson’s disease and stroke: a systematic review of measurement properties

  Roy G. Elbers, Marc B. Rietberg, Erwin E. H. van Wegen, John Verhoef, Sharon F. Kramer, Caroline B. Terwee, Gert Kwakkel
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  ABSTRACT: PurposeTo critically appraise, compare and summarize the measurement properties of self-report fatigue questionnaires validated in PurposeTo critically appraise, compare and summarize the measurement properties of self-report fatigue questionnaires validated in patients with multiple sclerosis (MS), Parkinson’s disease (PD) or stroke. patients with multiple sclerosis (MS), Parkinson’s disease (PD) or stroke. MethodsMEDLINE, EMBASE, PsycINFO, CINAHL and SPORTdiscus were searched. The COnsensus-based Standards for the selection of health MethodsMEDLINE, EMBASE, PsycINFO, CINAHL and SPORTdiscus were searched. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist was used to assess the methodological quality of studies. A qualitative data synthesis Measurement INstruments (COSMIN) checklist was used to assess the methodological quality of studies. A qualitative data synthesis was performed to rate the measurement properties for each questionnaire. was performed to rate the measurement properties for each questionnaire. ResultsThirty-eight studies out of 5,336 records met the inclusion criteria, evaluating 31 questionnaires. Moderate evidence was ResultsThirty-eight studies out of 5,336 records met the inclusion criteria, evaluating 31 questionnaires. Moderate evidence was found for adequate internal consistency and structural validity of the Fatigue Scale for Motor and Cognitive functions (FSMC) found for adequate internal consistency and structural validity of the Fatigue Scale for Motor and Cognitive functions (FSMC) and for adequate reliability and structural validity of the Unidimensional Fatigue Impact Scale (U-FIS) in MS. and for adequate reliability and structural validity of the Unidimensional Fatigue Impact Scale (U-FIS) in MS. ConclusionsWe recommend the FSMC and U-FIS in MS. The Functional Assessment of Chronic Illness Therapy Fatigue subscale (FACIT-F) and ConclusionsWe recommend the FSMC and U-FIS in MS. The Functional Assessment of Chronic Illness Therapy Fatigue subscale (FACIT-F) and Fatigue Severity Scale (FSS) show promise in PD, and the Profile of Mood States Fatigue subscale (POMS-F) for stroke. Future Fatigue Severity Scale (FSS) show promise in PD, and the Profile of Mood States Fatigue subscale (POMS-F) for stroke. Future studies should focus on measurement error, responsiveness and interpretability. Studies should also put emphasis on providing studies should focus on measurement error, responsiveness and interpretability. Studies should also put emphasis on providing input for the theoretical construct of fatigue, allowing the development of questionnaires that reflect generic and disease-specific input for the theoretical construct of fatigue, allowing the development of questionnaires that reflect generic and disease-specific symptoms of fatigue. symptoms of fatigue. KeywordsFatigue–Assessment–Psychometrics–Multiple sclerosis–Parkinson disease–Cerebrovascular disorders KeywordsFatigue–Assessment–Psychometrics–Multiple sclerosis–Parkinson disease–Cerebrovascular disorders
  Quality of Life Research 04/2012;
• Article: Evaluating health-related quality-of-life therapeutic effectiveness in a clinical trial with extensive nonignorable missing data and heterogeneous response: results from a phase III randomized trial of gemcitabine plus paclitaxel versus paclitaxel monotherapy in patients with metastatic breast cancer

  Carol M. Moinpour, Gary W. Donaldson, Astra M. Liepa, Allen S. Melemed, Joyce O’Shaughnessy, Kathy S. Albain
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  ABSTRACT: PurposeThis manuscript presents health-related quality of life (HRQL) results from a phase III trial of gemcitabine-paclitaxel (GT) versus paclitaxel (T) in metastatic breast cancer patients. MethodsPatients completed the Rotterdam Symptom Checklist (RSCL) and Brief Pain Inventory (BPI) at baseline and at the end of each cycle. Sensitivity analyses for six longitudinal pattern mixture models (PMMs) assessed potential bias due to informative dropout. Cumulative probability plots with 50% confidence intervals indicated the proportion of patients whose HRQL was likely to improve, decline, or stay the same. ResultsSensitivity analyses addressing nonignorable missing RSCL data included 351 patients. The mean RSCL global HRQL score for GT was significantly and consistently better than that for T (all PMMs P<0.040). The slope estimate of 1.5 points (100-point scale) per cycle from one PMM translated to a clinically significant 9-point improvement over six cycles with GT versus T. For GT, ~25% of patients were more likely than not to have improved HRQL, whereas that proportion for T was ~5%. PMMs showed no consistent treatment arm differences for BPI or other RSCL outcomes. ConclusionsAdding gemcitabine to paclitaxel for the treatment of metastatic breast cancer is more likely to improve global HRQL over time compared to monotherapy treatment. KeywordsGemcitabine–Paclitaxel–Quality of life–Phase III study–Breast cancer–Missing data
  Quality of Life Research 04/2012;
• Article: Predictors of quality of life in carers for people with a progressive neurological illness: a longitudinal study

  Elodie J. O’Connor, Marita P. McCabe
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  ABSTRACT: PurposeThe aim of the present research was to determine the predictors of quality of life (QOL) among carers for people living with a chronic degenerative neurological illness, with comparisons of the differences in significant predictors of QOL between illness groups. MethodsPsychosocial and economic variables were examined among 192 carers for people living at home with motor neurone disease, Huntington’s disease, multiple sclerosis, and Parkinson’s, over a twelve-month period, to determine their contribution to the prediction of carer QOL. ResultsMood was the only consistent predictor of carer QOL across groups; however, marital relationship satisfaction, social support satisfaction, income, and economic pressure significantly predicted carer QOL for at least one of the illness groups, in addition to mood. ConclusionsThe findings highlight the importance of recognising the varying roles that psychosocial and economic variables play on the prediction of carer QOL within each of these illness groups. KeywordsNeurological illness–Carer–Quality of life–Psychosocial–Economic–Family caregiver
  Quality of Life Research 04/2012; 20(5):703-711.
• Article: Kids’ Life and Times: using an Internet survey to measure children’s health-related quality of life

  Katrina Lloyd
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  ABSTRACT: ObjectiveTo examine the psychometric properties of an Internet version of a children and young person’s quality of life measure originally ObjectiveTo examine the psychometric properties of an Internet version of a children and young person’s quality of life measure originally designed as a paper questionnaire. designed as a paper questionnaire. MethodsParticipants were 3,440 children aged 10 and 11years in Northern Ireland who completed the KIDSCREEN-27 online as part of MethodsParticipants were 3,440 children aged 10 and 11years in Northern Ireland who completed the KIDSCREEN-27 online as part of a general attitudinal survey. The questionnaire was animated using cartoon characters that are familiar to most children and a general attitudinal survey. The questionnaire was animated using cartoon characters that are familiar to most children and the questions appeared on screen and were read aloud by actors. the questions appeared on screen and were read aloud by actors. ResultsExploratory principal component analysis of the online version of the questionnaire supported the existence of five components ResultsExploratory principal component analysis of the online version of the questionnaire supported the existence of five components in line with the paper version. The items loaded on the components that would be expected based on previous findings with in line with the paper version. The items loaded on the components that would be expected based on previous findings with five domains—physical well-being, psychological well-being, autonomy and parents, social support and peers, and school environment. five domains—physical well-being, psychological well-being, autonomy and parents, social support and peers, and school environment. Internal consistency reliability of the five domains was measured using Cronbach’s alpha, and the results suggested that the Internal consistency reliability of the five domains was measured using Cronbach’s alpha, and the results suggested that the scale scores were reliable. The domain scores were similar to those reported in the literature for the paper version. scale scores were reliable. The domain scores were similar to those reported in the literature for the paper version. ConclusionsThese results suggest that the factor structure and internal consistency reliability scores of the KIDSCREEN-27 embedded within ConclusionsThese results suggest that the factor structure and internal consistency reliability scores of the KIDSCREEN-27 embedded within an online survey are comparable to those reported in the literature for the paper version. an online survey are comparable to those reported in the literature for the paper version. KeywordsQuality of life–Children–KIDSCREEN-27–Internet survey KeywordsQuality of life–Children–KIDSCREEN-27–Internet survey
  Quality of Life Research 04/2012; 20(1):37-44.
• Article: Development and validation of a quality of life questionnaire for patients with vertebral fractures: Qualeffo-41

  P. Lips, A. Leplege
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  ABSTRACT: Vertebral fractures cause pain and may hamper activities of daily life, mobility, social activities and mental function. These aspects of quality of life may be assessed with a generic or disease-specific quality of life questionnaire. The International Osteoporosis Foundation has developed a specific questionnaire for patients with vertebral fractures. This questionnaire Qualeffo-41, contains 41 questions in the domains pain, physical function, social function, general health perception and mental function. The questionnaire has been translated into many languages. A multicenter validation study showed good repeatability, adequate internal consistency and good discrimination between patients with vertebral fractures and control subjects. Further clinical testing of Qualeffo-41 showed that the domain and total scores increased linearly with the number of prevalent vertebral fractures. Lumbar fractures had more impact on quality of life than thoracic fractures. The impact of vertebral fractures on quality of life increased with age. The results with Qualeffo-41 confirm the decreased quality of life in patients with vertebral fractures.
  Quality of Life Research 04/2012; 9:763-766.
• Article: Measurement accuracy in assessing patient’s quality of life: to weight or not to weight domains of quality of life

  Errol J. Philip, Thomas V. Merluzzi, Amy Peterman, Lisa B. Cronk
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  ABSTRACT: PurposeHealth-related quality of life (HRQOL) measures typically do not incorporate patients’ preferences for domains such as physical, emotional, functional and social/family well-being, which may compromise precision. MethodA forced-choice domain-preference measure was developed to assess the importance of HRQOL domains. About 194 cancer patients completed the domain-preference measure, along with measures of HRQOL, coping, adjustment, and life satisfaction. ResultsPatients ranked emotional well-being as most important and the loss of social-family well-being as the most difficult to do without. A weighting algorithm revealed no advantage to incorporating individuals’ domain preferences in HRQOL assessment; however, preliminary evidence suggested that HRQOL measurement may be more accurate in predicting outcomes for individuals with no distinct domain preferences than those with distinct preference profiles. ConclusionThis study provides preliminary evidence for the validity of current measures of HRQOL, which may inherently take into account patients’ domain preferences.
  Quality of Life Research 04/2012; 18(6):775-782.
• Article: Measuring health-related quality-of-life for Alzheimer’s disease using the general public

  Feng Xie, Mark Oremus, Kathryn Gaebel
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  ABSTRACT: PurposeLittle research exists to indicate whether the general public can provide proxy health-related quality-of-life (HRQoL) estimates for persons with Alzheimer’s disease (AD). We investigated (1) whether the general public can differentiate between mild, moderate, and severe AD and (2) whether the general public’s proxy HRQoL estimates are correlated with current health status. MethodsWe conducted computer-assisted personal interviews. The computer randomly assigned each participant to read a vignette describing mild, moderate, or severe AD. Participants answered the EQ-5D-5L and Quality-of-life-Alzheimer’s Disease (QoL-AD), while imagining living in the health state described in their assigned vignette. Participants also answered the EQ-5D-5L based on their health state at the time of the interview. ResultsWe interviewed 100 participants. EQ-5D-5L utilities were 0.7413 (mild), 0.6159 (moderate), and 0.4456 (severe) (P<0.001). Mean QoL-AD scores were 32.5 (mild), 24.0 (moderate), and 21.8 (severe) (P<0.0001 for severe vs. mild, moderate vs. mild; P>0.05 for severe vs. moderate). Participants’ EQ-5D-5L utility scores were weakly correlated (r≤0.28) across both administrations of the instrument. ConclusionsThe general public can differentiate between the three stages of AD, and their HRQoL estimates for AD are weakly correlated with their current health status. KeywordsAlzheimer’s disease–Quality-of-life–Proxy–Health utility–EQ-5D
  Quality of Life Research 04/2012; 21(4):593-601.
• Article: Mothers of infants with congenital heart defects: well-being from pregnancy through the child’s first six months

  Maria T. Grønning Dale, Øivind Solberg, Henrik Holmstrøm, Markus A. Landolt, Leif T. Eskedal, Margarete E. Vollrath
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  ABSTRACT: PurposeThis study compared the well-being among mothers of children with congenital heart defects (CHD) with mothers of children without CHD (controls), at pregnancy and at 6 months postpartum. MethodsWe linked prospective data from the Norwegian Mother and Child Cohort Study (MoBa), conducted by the Norwegian Institute of Public Health, with a nationwide medical CHD registry. In the MoBa cohort of 61,456 mothers, we identified 212 mothers of infants with mild (n=92), moderate (n=50), or severe CHD (n=70). Subjective well-being was operationalized by means of maternal life satisfaction, joy, and anger at the 30thweek of gestation and at 6months postpartum. ResultsSubjective well-being in mothers of children with CHD remained unchanged and similar to that of controls on satisfaction with life (P=0.120) and feelings of joy (P=0.065). However, at child age 6months, mothers of infants with severe CHD reported slightly elevated feelings of anger compared with controls (P=0.006). ConclusionsJoy and life satisfaction remained intact among mothers of children with CHD. Yet, elevated feelings of anger in mothers of children with the most severe CHD suggest that they may experience more frustration. KeywordsCongenital heart defect–Life satisfaction–Joy–Anger–Motherhood
  Quality of Life Research 04/2012; 21(1):115-122.
• Article: The comparative responsiveness of the EQ-5D and SF-6D to change in patients with inflammatory arthritis

  M. J. Harrison, L. M. Davies, N. J. Bansback, M. J. McCoy, S. M. M. Verstappen, K. Watson, D. P. M. Symmons
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  ABSTRACT: PurposeComparative evidence regarding the responsiveness of the EQ-5D and SF-6D in arthritis patients is conflicting and insufficient across the range of disease severity. We examined the comparative responsiveness of the EQ-5D and SF-6D in cohorts of patients with early inflammatory disease through to severe rheumatoid arthritis (RA). MethodsResponsiveness was tested using the effect size (ES) and standardised response mean (SRM). Correlation of change in EQ-5D and SF-6D with disease specific measures was tested using Pearson correlations and the Steiger’s Z test. Treatment response and self-reported change were used as anchors of important change. ResultsThe EQ-5D was more responsive to deterioration (ES ratio (EQ-5D/SF-6D): 1.6–3.0) and the SF-6D more responsive to improvement (ES ratio (SF-6D/EQ-5D): 1.1–1.8) in health. The SF-6D did not respond well to deterioration in patients with established severe RA (ES and SRM 0.08). The EQ-5D provided larger absolute mean change estimates but with greater variance compared to the SF-6D. ConclusionsThe comparative responsiveness of the EQ-5D and SF-6D differs according to the direction of change. The level of mean change of the EQ-5D relative to the SF-6D has implications for cost-effectiveness analysis. Use of the SF-6D in patients with severe progressive disease may be inappropriate.
  Quality of Life Research 04/2012; 18(9):1195-1205.
• Article: Health related quality of life in patients with neuroendocrine tumors compared with the general Norwegian population

  Trude Haugland, Morten H. Vatn, Marijke Veenstra, Astrid Klopstad Wahl, Gerd Karin Natvig
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  ABSTRACT: PurposeHealth related quality of life (HRQoL) was characterized among patients with neuroendocrine tumor (NET) and compared with the general Norwegian population. MethodsA cross sectional, comparative design was chosen, and the samples comprised 196 NET patients and 5,258 individuals from the general Norwegian population. We used Chi-square cross tab calculations to evaluate sociodemographic characteristics, T-tests for independent samples and Analysis of Variance (ANOVA) in order to compare HRQoL (SF-36) scores across a range of background variables. Furthermore, T-tests were used to analyze differences in HRQoL scores between the samples. ResultsNET patients demonstrated significantly lower on all HRQoL subscales when compared with the general population with the lowest values on general health, physical limitation and vitality. Individuals above 70years reported lower scores on physical functioning and physical limitations compared with those who were younger. Individuals with higher levels of education reported increased physical functioning compared with those with less education and full-time or part-time workers described higher physical functioning and less physical limitations compared with those who were retired. ConclusionsAll SF-36 HRQoL scores were significantly lower among the NET patients when compared with the general population. Assistance from health personnel to NET patients should focus on those domains.
  Quality of Life Research 04/2012; 18(6):719-726.