Course Of Health-related Quality Research Articles

73 Long-term psychosocial impact of head & neck cancer treatment

Advancing insights into QOL of long-term survivorsIn this presentation, the following topics will be addressed: •Changes in health related quality of life over time from time of diagnosis to 2 years after treatment•Health related quality of life in relation to survival•What is the role of personal, clinical, biological, physical, psychological, social, lifestyle, and HNC-related factors?Data was used of The NETherlands QUality of life and BIomedical Cohort study in head and neck cancer (HNC) (NET-QUBIC) a prospective cohort study including 739 HNC patients and 262 informal caregivers. NET-QUBIC comprises a Data Warehouse and Biobank integrating detailed clinical information and data derived from patient reported outcomes, interviews, and functional tests, and samples of tumour tissue, blood, oral rinse, and saliva. Data and samples are available to researchers worldwide via data releases that are announced on www.kubusproject.nl.In the present study, we used NET-QUBIC data and samples to investigate the course of health related quality of life of HNC patients from diagnosis to 3, 6, 12 and 24 months after treatment. Health related quality of life was operationalised by the EORTC QLQ-C30 global quality of life subscale (2 items) and the summary score.

The course of health-related quality of life after the diagnosis of childhood cancer: a national cohort study

BackgroundComprehensive insight in the longitudinal development of health-related quality of life (HRQOL) after childhood cancer diagnosis could improve quality of care. Thus, we aimed to study the course and biopsychosocial determinants of HRQOL in a unique national cohort of children with cancer.MethodsHRQOL of 2154 children with cancer was longitudinally reported (median: 3 reports) between diagnosis and 5 years after, using the pediatric quality of life inventory generic core scales (PedsQL). HRQOL was modelled over time since diagnosis using mixed model analysis for children 2–7 years (caregiver-reports) and ≥ 8 years (self-reports). Differences in the course between hematological, solid and central nervous system malignancies were studied. Additional associations of demographics, disease characteristics (age at diagnosis, relapse, diagnosis after the national centralization of childhood cancer care and treatment components) and caregiver distress (Distress thermometer) were studied.ResultsOverall, HRQOL improved with time since diagnosis, mostly in the first years. The course of HRQOL differed between diagnostic groups. In children aged 2–7 years, children with a solid tumor had most favorable HRQOL. In children aged ≥ 8 years, those with a hematological malignancy had lower HRQOL around diagnosis, but stronger improvement over time than the other diagnostic groups. In both age-groups, the course of HRQOL of children with a CNS tumor showed little or no improvement. Small to moderate associations (β: 0.18 to 0.67, p < 0.05) with disease characteristics were found. Centralized care related to better HRQOL (β: 0.25 to 0.44, p < 0.05). Caregiver distress was most consistently associated with worse HRQOL (β: − 0.13 to − 0.48, p < 0.01).ConclusionsThe HRQOL course presented can aid in identifying children who have not fully recovered their HRQOL following cancer diagnosis, enabling early recognition of the issue. Future research should focus on ways to support children, especially those with a CNS tumor, for example by decreasing distress in their caregivers.

The course of health-related quality of life in the first 2 years after a diagnosis of head and neck cancer: the role of personal, clinical, psychological, physical, social, lifestyle, disease-related, and biological factors

PurposeThe aim of this prospective cohort study was to estimate the relationship between the course of HRQOL in the first 2 years after diagnosis and treatment of head and neck cancer (HNC) and personal, clinical, psychological, physical, social, lifestyle, HNC-related, and biological factors.MethodsData were used from 638 HNC patients of the NETherlands QUality of life and BIomedical Cohort study (NET-QUBIC). Linear mixed models were used to investigate factors associated with the course of HRQOL (EORTC QLQ-C30 global quality of life (QL) and summary score (SumSc)) from baseline to 3, 6, 12, and 24 months after treatment.ResultsBaseline depressive symptoms, social contacts, and oral pain were significantly associated with the course of QL from baseline to 24 months. Tumor subsite and baseline social eating, stress (hyperarousal), coughing, feeling ill, and IL-10 were associated with the course of SumSc. Post-treatment social contacts and stress (avoidance) were significantly associated with the course of QL from 6 to 24 months, and social contacts and weight loss with the course of SumSc. The course of SumSc from 6 to 24 months was also significantly associated with a change in financial problems, speech problems, weight loss, and shoulder problems between baseline and 6 months.ConclusionBaseline clinical, psychological, social, lifestyle, HNC-related, and biological factors are associated with the course of HRQOL from baseline to 24 months after treatment. Post-treatment social, lifestyle, and HNC-related factors are associated with the course of HRQOL from 6 to 24 months after treatment.

Characterizing the individual course of health-related quality of life after subarachnoid haemorrhage: Latent growth mixture modelling

BackgroundSurvivors of aneurysmal subarachnoid haemorrhage (SAH) show heterogeneous profiles of health-related quality of life (HrQoL). The aim of this study was to characterize individual differences in the course of HrQoL following SAH using latent growth mixture modelling (LGMM). MethodsA longitudinal study with 113 incident cases of aneurysmal SAH was performed in order to evaluate clinical outcome (Hunt and Hess scale, Barthel-Index, Beck Depression Inventory) and HrQoL data (EQ-5D) at baseline, 6 and 12 months. The heterogeneity in HrQoL courses after SAH was analysed using LGMM. ResultsFour subgroups (classes) of different patterns of HrQoL course after SAH were identified. Two of these classes (1 and 3) comprised patients with considerably reduced initial HrQoL, which was associated with more severe symptoms of SAH. Class 1 showing the worst EQ5D-index values during the entire study period. Class 3 experiencing a considerable improvement in HrQoL values. In comparison to classes 1 and 3, class 2 and 4 were characterized by less severe SAH and better functional outcome. An important difference in the disease course between classes 2 and 4 was a temporary increase in depression scores at the 6-month time point in class 4, which was associated with a considerable reduction in HrQoL.The specific clinical parameters characterizing differences between classes, such as severity of SAH, functional outcome, cognitive impairment and post-stroke depression, were identified and the influence of their potential improvement on HrQoL was estimated. ConclusionBy means of LGMM we could classify the course of HrQoL after SAH in four different patterns, which are relevant for the clinical decisions. Clinical parameters, which can be modified in order to improve the course of HrQoL were identified and could help to develop individual therapeutic strategies for the rehabilitation after SAH.

O2.1 The course of health-related quality of life from diagnosis to two years follow-up in patients with oropharyngeal cancer: does HPV status matter?

O2.1 The course of health-related quality of life from diagnosis to two years follow-up in patients with oropharyngeal cancer: does HPV status matter?

Longitudinal course and phenotypes of health-related quality of life in adults with atopic dermatitis.

The real-world course of health-related quality of life (HRQoL) in atopic dermatitis (AD) is not well established. To examine predictors, longitudinal course and phenotypes of HRQoL in adult patients with AD. This was a prospective dermatology-practice based study of 955 patients with AD (age 18-97 years). Patients were assessed at baseline and approximately 6, 12, 18 and 24 months. HRQoL was assessed using the 10-item short-form Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health (PGH). AD severity and impact was assessed by patient-reported global AD severity, Patient-Oriented Eczema Measure (POEM), Eczema Area and Severity Index (EASI), Objective SCORing Atopic Dermatitis (O-SCORAD), Investigator's Global Assessment (IGA), Numerical Rating Scale (NRS) average and worst itch, PROMIS sleep-related impairment (SRI), and nine-item Patient Health Questionnaire (PHQ)-9. Repeated-measures regression models were constructed to examine itch over time. In multivariable linear regression models controlling for age, race/ethnicity, history of asthma, hay fever and food allergy, baseline PGH-physical (PGH-P4) T scores were inversely associated with patient-reported global AD severity, POEM, EASI, objective SCORAD, IGA, NRS average and worst itch, PROMIS SRI and PHQ-9, with stepwise decreases of physical health with worsening severity. PGH-mental health (PGH-M4) T scores were associated with all aforementioned severity measures aside from POEM. In multivariable repeated measures linear regression models, decreased PGH-P4 and PGH-M4 T scores and mapped five-dimension EuroQoL over time were associated with self-reported global AD severity, NRS worst and mean itch, POEM, PROMIS sleep disturbance and SRI, EASI, objective SCORAD, IGA and PHQ-9. Latent class analysis identified six classes of HRQoL, which were associated with measures of AD severity, nonwhite race, Hispanic ethnicity and having only public health insurance, but not age or sex. Patients with AD have a heterogeneous longitudinal course and distinct patterns of HRQoL. Many patients had fluctuating HRQoL over time. Most patients with moderate to severe disease at baseline had persistent HRQoL impairment over time.

Longitudinal changes in physical and mental health of older adults with chronic hepatitis B infection: Trajectories and predictors.

Despite the increasing health burden of chronic hepatitis B (CHB) in aging populations, little is known about the course of health-related quality of life (HRQoL) changes. We aimed to assess individual-level longitudinal HRQoL changes in elderly patients with CHB and to examine their correlates. A prospective 5.1years-cohort study was conducted in community-dwelling adults aged 55years with hepatitis B surface antigen-positive. Participants underwent serial measurement of HRQoL using the short-form (12) health survey version 2. Of 503 participants, 82.7% remained in good physical health throughout the study period, whereas 9.1% had declining physical health and 8.2% were in poor physical health. We likewise identified three trajectories of mental health changes ("good mental health" [86.9%], "declining mental health" [6.8%], and "poor mental health" [6.4%]). Three baseline characteristics were independently associated with a lower likelihood of remaining physically or mentally healthy: sarcopenic obesity (odds ratio [OR] with 95% confidence interval [95% CI] of 7.5 [2.8-20.5] for poor physical health, 3.1 [1.1-8.4] for declining physical health, 4.3 [1.4-13.0] for poor mental health), a higher number of metabolic abnormalities (OR [95% CI] of 3.6 [1.6-8.0] for poor physical health) and depressed mood (OR [95% CI] of 21.7 [5.8-81.0] for poor physical health, 5.3 [1.4-19.9] for declining physical health, 83.1 [19.7-350.2] for poor mental health, 13.6 [2.9-64.8] for declining mental health). In conclusion, in a cohort of elderly patients with CHB, we demonstrated the heterogeneity and nonlinearity of HRQoL changes and their associations with variations in specific extrahepatic organs/systems.

The course of health-related quality of life from diagnosis to two years follow-up in patients with oropharyngeal cancer: does HPV status matter?

PurposeTo investigate the course of health-related quality of life (HRQOL) from diagnosis to 2 years follow-up among patients with oropharyngeal cancer (OPSCC), in relation to human papilloma virus (HPV) status.MethodsThis study included 270 OPSCC patients. Age, sex, tumor sublocation, tumor stage, HPV status, treatment modality, comorbidity, smoking, and alcohol use were retrieved from medical records. HPV status was positive when p16 and HPV DNA tests were both positive. HRQOL was assessed using the EORTC QLQ-C30/QLQ-H&N35 pretreatment and at 6 weeks, 6, 12, 18, and 24 months after treatment. To compare the course of HRQOL between patients with an HPV-positive versus HPV-negative tumor, linear and logistic mixed models were used.ResultsPatients with an HPV-positive tumor (29%) were more often male, diagnosed with a tumor of the tonsil or base of the tongue, treated with single treatment, had fewer comorbidities, were less often current smokers and had lower alcohol consumption. Adjusted for confounders, the course of global quality of life, physical, role, and social functioning, fatigue, pain, insomnia, and appetite loss was significantly different: patients with an HPV-positive tumor scored better before treatment, worsened during treatment, and recovered better and faster at follow-up, compared to patients with an HPV-negative tumor. The course of emotional functioning and oral pain was also significantly different between the two groups, but with other trajectories.ConclusionThe course of HRQOL is different in patients with an HPV-positive tumor versus an HPV-negative tumor, adjusted for sociodemographic, clinical, and lifestyle confounders.

Trajectories of Health Changes in Older Adults with Chronic Hepatitis B Infection

Despite the increasing burden of chronic hepatitis B (CHB) in aging populations, little is known about the course of health-related quality of life (HRQoL) changes during older adulthood in CHB patients. We aimed to assess individual-level longitudinal HRQoL changes in older patients with CHB and to examine their correlates. A 5-year prospective cohort study was conducted in 503 hepatitis B surface antigen-positive community-dwelling adults aged 55 years or older. Participants underwent comprehensive assessments at baseline and serial measurement of HRQoL using the short-form (12) health survey version 2. Of these participants, 82.7% remained in good physical health throughout the study period, whereas 9.1% had declining physical health and 8.2% were in poor physical health. We likewise identified three trajectories of mental health changes (“good mental health” [86.9%], “declining mental health” [6.8%], and “poor mental health” [6.4%]). Three baseline characteristics were independently associated with a lower likelihood of remaining physically or mentally healthy during older adulthood: sarcopenic obesity (odds ratio [OR] with 95% confidence interval [95% CI] of 7.5[2.8-20.5] for poor physical health, 3.1 [1.1-8.4] for declining physical health, 4.3 [1.4-13.0] for poor mental health), higher number of metabolic abnormalities (OR [95% CI] of 3.6 [1.6-8.0] for poor physical health) and depressed mood (OR [95% CI] of 21.7 [5.8-81.0] for poor physical health, 5.3 [1.4-19.9] for declining physical health, 83.1 [19.7-350.2] for poor mental health, 13.6 [2.9-64.8] for declining mental health). In conclusion, we demonstrated the heterogeneity and nonlinearity of HRQoL changes and their associations with variations in specific extrahepatic organs/systems.

Quality of Life During and After Completion of Neoadjuvant Chemoradiotherapy for Esophageal and Junctional Cancer

BackgroundThe course of health-related quality of life (HRQOL) during and after completion of neoadjuvant chemoradiotherapy (nCRT) for esophageal or junctional carcinoma is unknown.MethodsThis study was a multicenter prospective cohort investigation. Patients with esophageal or cancer to be treated with nCRT plus esophagectomy were eligible for inclusion in the study. The HRQOL of the patients was measured with European Organization for Research and Treatment of Cancer QLQ-C30, QLQ-OG25, and QLQ-CIPN20 questionnaires before and during nCRT, then 2, 4, 6, 8, 10, 12, 14, and 16 weeks after nCRT and before surgery. Predefined end points were based on the hypothesized impact of nCRT. The primary end points were physical functioning, odynophagia, and sensory symptoms. The secondary end points were global quality of life, fatigue, weight loss, and motor symptoms. Mixed modeling analysis was used to evaluate changes over time.ResultsOf 106 eligible patients, 96 (91%) were included in the study. The rate of questionnaires returned ranged from 94% to 99% until week 12, then dropped to 78% in week 16 after nCRT. A negative impact of nCRT on all HRQOL end points was observed during the last cycle of nCRT (all p < 0.001) and 2 weeks after nCRT (all p < 0.001). Physical functioning, odynophagia, and sensory symptoms were restored to pretreatment levels respectively 8, 4, and 6 weeks after nCRT. The secondary end points were restored to baseline levels 4–6 weeks after nCRT. Odynophagia, fatigue, and weight loss improved after nCRT compared with baseline levels at respectively 6 (p < 0.001), 16 (p = 0.001), and 12 weeks (p < 0.001).ConclusionAfter completion of nCRT for esophageal cancer, HRQOL decreases significantly, but all HRQOL end points are restored to baseline levels within 8 weeks. Odynophagia, fatigue, and weight loss improved 6–16 weeks after nCRT compared with baseline levels.

Comparison of short- and mid-term outcomes of Italian- and German-speaking patients after an interdisciplinary pain management programme in Switzerland: A prospective cohort study.

To quantify and compare the course of health-related quality of life of immigrant native Italian-speaking and German-speaking patients before and after an interdisciplinary pain programme. Prospective cohort study with 1-12 month follow-up. Fibromyalgia, generalized widespread pain, and chronic non-specific back pain patients (Italian-speaking n = 96, German-speaking n = 199). Score changes measured with the Short Form 36 (SF-36) were compared with multivariate analysis using standardized mean differences (SMD), adjusted for sex, education and the baseline score. At baseline, health of the Italian-speaking patients was worse than for the German-speaking patients. Adjusted SMDs showed significantly better improvements in the German group compared with the Italian group: SF-36 Physical functioning SMD = 0.54 (at discharge) and 0.49 (at 12 months), General health SMD = 0.71 and 0.44, Vitality SMD = 0.43 and 0.48 in one sample. In the other sample, the corresponding SMDs were 0.06 (discharge), 0.50 (3 months) and 0.47 (6 months) for Bodily pain. State of health was better and health improvements were greater in German-speaking patients compared with Italian-speaking patients. Patients with a migration background may have special needs in therapeutic management, and addressing these might enhance the positive outcome in the short- and mid-term.

German-wide prospective DACAPO cohort of survivors of the acute respiratory distress syndrome (ARDS): a cohort profile

PurposeWhile most research focuses on the association between medical characteristics and residual morbidity of survivors of the acute respiratory distress syndrome (ARDS), little is known about the relation between potentially...

Factors associated with the course of health-related quality of life after a hip fracture.

The number of hip fracture patients is expected to grow the forthcoming decades. Knowledge of the impact of the fracture on the lives of elderly could help us target our care. The aim of the study is to describe HRQoL (Health-Related Quality of Life) after a hip fracture and to identify factors associated with the course of HRQoL in the first postoperative year. 335 surgically treated hip fracture patients (mean age 79.4years, SD 10.7, 68% female) were included in a prospective observational cohort. HRQoL was measured with the SF-12 Health Survey, composed of the Physical and a Mental Component Summary Score (PCS, MCS), at admission (baseline) and at 3 and 12months postoperatively. Eleven predefined factors known to be associated with the course of HRQoL were recorded: age, gender, physical status, having a partner at admission, living in an institution, prefracture level of mobility, anemia, type of fracture and treatment, delirium during hospital stay and length of stay. HRQoL declined between baseline and 3months, and recovered between three and 12months. PCS HRQoL did not recover to baseline values, MCS HRQoL did. Age younger than 80years, ASA classification I and II, higher prefracture level of mobility, intracapsular fracture and treatment with osteosynthesis (compared to arthroplasty) were associated with greater initial decline in PCS HRQoL, none of the recorded factors were significant for decline in MCS HRQoL. Both PCS and MCS HRQoL declined after a hip fracture and PCS did not recover to baseline values. Healthier patients may need extra care to prevent them from having a steep decline in postoperative PCS HRQoL and arthroplasty should be considered with low threshold.

Patients' perspective on the impact of sentinel node biopsy in oral cancer treatment

Assessment of the impact of a sentinel node biopsy (SNB)-based strategy in cT1/T2 N0 oral cancer on the course of health related quality of life, psychological distress, and shoulder disability, and evaluation of the patients' perspective on neck management strategies. Fifty-two patients (39 SNB negative; 13 SNB positive) completed the European Organization for Research and Treatment of Cancer (EORTC) questionnaires-QLQ-C30 and QLQ-H&N35, and the HADS, IES, and SDQ questionnaires at baseline, after SNB diagnosis and at 6 months of follow-up. Objective shoulder measurements were performed after 2years and interviews were conducted after 4.5months of follow-up. All the scores of the questionnaires were not significantly different between SNB negative and SNB positive patients. Objective shoulder functioning was similar. Most patients preferred a SNB-based strategy to an elective neck dissection strategy. The impact of a SNB-based strategy in patients with cT1/T2 N0 oral cancer is comparable for SNB-negative and SNB-positive patients in terms of health-related quality of life, psychological distress and shoulder functioning. Most patients preferred the SNB-based strategy over the elective neck dissection strategy.

Predictors of health-related quality of life in stroke patients after neurological inpatient rehabilitation: a prospective study

BackgroundThe goal of the study was to investigate the long-term course of health-related quality of life (HRQoL) in stroke survivors during and up to 2.5 years after inpatient neurological rehabilitation and to identify predictors of HRQoL.MethodsHRQoL was determined in 152 stroke survivors in a single-centre prospective cohort study at four time points: upon admission to inpatient rehabilitation, at discharge, and one and 2.5 years after discharge. Their HRQoL was determined by administering the EQ-5D at all four measurement points. During inpatient rehabilitation, the SF-36 was administered in addition to the EQ-5D. Predictors were identified through multiple regression analysis.ResultsDuring inpatient rehabilitation, the “European Index” of the EQ-5D rose significantly (p < 0.001) from 45.4 to 66.7. The change in HRQoL on the SF-36 was convergent. The HRQoL of the stroke patients living at home remained at the same level for 2.5 years following discharge. In the multiple regression analysis, the EQ-5D Index at discharge (p = 0.049), the risk of falls as defined by Runge and Rehfeld (p = 0.001), and the change in emotional quality of life on the SF-36 during inpatient rehabilitation (p = 0.048) predicted HRQoL 2.5 years following discharge.ConclusionOn the basis of our results, we conclude that the long-term health-related quality of life of stroke survivors can be positively influenced by reducing the risk of falls and improving emotional well-being during neurological inpatient rehabilitation.Electronic supplementary materialThe online version of this article (doi:10.1186/s12955-015-0258-9) contains supplementary material, which is available to authorized users.

The role of personality in the course of health-related quality of life and disease-specific health status among colorectal cancer survivors: A prospective population-based study from the PROFILES registry

Background. Prospective studies in various cardiovascular populations show that Type D personality predicted impaired health-related quality of life (HRQoL) and disease-specific health status. We examined the effect of negative affectivity (NA), social inhibition (SI) and their combined effect (Type D personality) on HRQoL and disease-specific health status among colorectal cancer (CRC) patients.Methods. CRC patients diagnosed between 2000 and 2009, as registered in the Dutch population-based Eindhoven Cancer Registry, received questionnaires on Type D personality (DS14), HRQoL (EORTC QLQ-C30) and disease-specific health status (EORTC QLQ-CR38) in 2010, 2011 and 2012.Results. Response rates were 73% (n = 2625), 83% (n = 1643) and 82% (n = 1458), respectively. Analyses were done on those completing at least two questionnaires (n = 1735). Individuals with Type D (NA+/SI+; 19%) and high NA (NA+/SI-; 11%) reported a significantly worse HRQoL and disease-specific health status compared to NA-/SI+ and NA-/SI-. Differences were stable over time. Linear mixed effects models showed that Type Ds had a lower quality of life, cognitive and emotional functioning, more insomnia, diarrhea, gastrointestinal, defecation and stoma-related problems and poor body image and future perspective compared to the reference group (NA-/SI-), even after controlling for sociodemographic and clinical variables. High NA individuals (NA+/SI-) reported similar poor health outcomes as Type Ds. However, they also reported lower social functioning and more fatigue, pain, micturition- and financial problems, while Type Ds reported more constipation, sexual problems and less sexual enjoyment.Conclusions. Type D personality and high NA both have a significant negative stable impact on HRQoL and disease-specific health status among CRC patients.

Quality of life one year post-Shiga toxin-producingEscherichia coliO104 infection - A prospective cohort study

In 2011, a major outbreak of hemolytic-uremic syndrome (HUS) and bloody diarrhea related to infections from Shiga toxin-producing Escherichia coli O104 (STEC) occurred in Germany. While previous research has focused on the medical components of this disease, we aimed to investigate the course of health-related quality of life (HrQoL) over 12 months including somatic and psychosocial risk factors. Furthermore, the influence of chronic fatigue (CF) on HrQoL was examined. A prospective cohort study with n = 389 patients completing self-report scales at baseline, after 6 months (participation rate: 79%) and after 12 months (participation rate: 77%). The courses of physical and mental HrQoL over the 12 month period were calculated by employing general linear mixed models. While the physical component score of HrQoL reached a score comparable to the general population, the mental component score remained below average 12 months after STEC infection. Female gender, prior psychiatric disorder, and prior traumatic events were risk factors for a worse HrQoL course after 12 months, while social support was identified to be protective. CF was associated with low HrQoL. In addition, the somatic symptom burden remained persistently high. Our results show high somatic and psychosocial burden in patients 12 months after STEC infection. We recommend considering the risk factors and protective factors of poor HrQoL early in the treatment of STEC or similar diseases. Patients who are suffering from persisting somatic symptoms, CF, and impaired HrQoL may require specific aftercare.

The course of health-related quality of life in head and neck cancer patients treated with chemoradiation: A prospective cohort study

Background and purposeTo evaluate the course of health-related quality of life (HRQOL) from diagnosis to 2years follow-up in patients with head and neck cancer (HNSCC) treated with chemoradiation (CRT). Materials and methods164 patients completed the EORTC QLQ-C30 and QLQ-H&N35 questionnaires 1week before and 6weeks and 6, 12, 18, and 24months after CRT. Patients were compared to a reference group. A linear mixed-model analysis was used to assess changes in HRQOL over time, and whether this was associated with age, gender, comorbidity, and tumor sublocation. ResultsSignificant differences for the majority of HRQOL scales were observed between patient and reference group at baseline, and follow-up. The course of HRQOL was different for survivors compared to non-survivors. In survivors, improvement over time was observed (in global quality of life, physical, role, and social function, fatigue, pain, swallowing, speech, social eating, and social contacts), while in non-survivors the pattern over time was either no changes in HRQOL or a deterioration (in physical function, social eating and contacts). In both survivors and non-survivors, emotional functioning improved after treatment, but deteriorated in the longer term. Patients with comorbidity reported worse physical function, and patients with oral/oropharyngeal cancer (compared to hypopharyngeal/laryngeal cancer) reported more oral pain and sexual problems, but fewer speech problems. ConclusionsThe course of HRQOL of HNSCC patients during the first 2years after CRT is different for survivors compared to non-survivors and is associated with comorbidity and tumor subsite.

Health-Related Quality of Life 3 Years After Moderate to Severe Traumatic Brain Injury: A Prospective Cohort Study

ObjectivesTo evaluate the time course of health-related quality of life (HRQoL) after moderate to severe traumatic brain injury (TBI) and to identify its predictors. DesignProspective cohort study with follow-up measurements at 3, 6, 12, 18, 24, and 36 months after TBI. SettingPatients with moderate to severe TBI discharged from 3 level-1 trauma centers. ParticipantsPatients (N=97, 72% men) with a mean age ± SD of 32.8±13.0 years (range, 18–65y), hospitalized with moderate (23%) or severe (77%) TBI. InterventionsNot applicable. Main Outcome MeasuresHRQoL was measured with the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), functional outcomes with the Glasgow Outcome Scale (GOS), Barthel Index, FIM, and Functional Assessment Measure, and mood with the Wimbledon Self-Report Scale. ResultsThe SF-36 domains showed significant improvement over time for Physical Functioning (P<.001), Role Physical (P<.001), Bodily Pain (P<.001), Social Functioning (P<.001), and Role Emotional (P=.024), but not for General Health (P=.263), Vitality (P=.530), and Mental Health (P=.138). Over time there was significant improvement in the Physical Component Summary (PCS) score, whereas the Mental Component Summary (MCS) score remained stable. At 3-year follow-up, HRQoL of patients with TBI was the same as that in the Dutch normative population. Time after TBI, hospital length of stay (LOS), FIM, and GOS were independent predictors of the PCS, whereas LOS and mood were predictors of the MCS. ConclusionsAfter TBI, the physical component of HRQoL showed significant improvement over time, whereas the mental component remained stable. Problems of disease awareness seem to play a role in self-reported mental HRQoL. After TBI, mood status is a better predictor of the mental component of HRQoL than functional outcome, implying that mood should be closely monitored during and after rehabilitation.

The course of health-related quality of life of preschool children with cerebral palsy

Purpose: The purpose of this paper is to describe the course of the health-related quality of life (HR-QoL) of children with cerebral palsy (CP) between the ages of 2.5 and 4.5 years, at both group and individual level. We also examined whether CP characteristics are helpful in understanding which children show a decrease in HR-QoL. Methods: HR-QoL of 72 children with CP was measured using the TNO-AZL Preschool children Quality of Life (TAPQOL) questionnaire at the ages of 2.5, 3.5 and 4.5 years. The course of HR-QoL was compared between groups with different CP characteristics. Results: Median scores for 10 of the 12 domains of the TAPQOL were found to be stable between ages 2.5 and 4.5 years. However, individual children showed great changes in HR-QoL at these ages, for all domains. A larger proportion of children with less severe CP showed a decrease in HR-QoL for the behaviour problems domain (p = 0.02), and a larger proportion of unilaterally affected children showed a decrease in HR-QoL regarding the anxiety (p < 0.001) and social functioning (p = 0.01) domains. Conclusions: Although the median HR-QoL of children with CP is generally stable at these ages, much variation in the course of HR-QoL exists between individual children. There is no clear association between motor functioning or limb distribution and a decrease in HR-QoL.Implications for RehabilitationAlthough preschool children with cerebral palsy (CP) generally have a fairly good health-related quality of life, large individual differences in the course of health-related quality of life exist.The type of CP or the level of motor disabilities is not related to the course of health-related quality of life.Because of its subjective nature, for young children with CP health-related quality of life is to be determined by asking their parents, not by doctor’s estimation depending on disease-specific factors.