Self-assessed Quality Of Life Research Articles

A psychometric analysis of quality of life tools in lung cancer patients who smoke

Lung cancer is the leading cause of cancer death for both men and women in the United States. Patient quality of life (QOL) prior to cancer treatment is known to be a strong predictor of survival and toleration of treatment toxicities. A lung cancer patient's self-assessment of QOL is highly valued among clinicians as it guides treatment-related decisions and impacts clinical outcomes. Smokers are known to report a lower QOL. Limited research has been conducted on QOL outcomes in lung cancer patients who continue to smoke. To assess QOL, a reliable and valid QOL measure specific to lung cancer is required. The functional assessment of cancer therapy-lung cancer (FACT-L) and lung cancer symptom scale (LCSS) are instruments that specifically examine QOL among lung cancer patients. The LCSS is a focused QOL instrument that includes physical and functional domains of QOL and disease symptomatology. The FACT-L is a broader QOL instrument that includes physical, functional, social and emotional domains and disease symptomatology. Both are psychometrically valid and are widely used in the literature, but have not been exclusively evaluated in smokers. Furthermore, there is no ‘gold standard’ instrument since there has never been a correlation study to compare estimates of reliability and validity between these instruments. The purpose of this study is to report the internal consistency and convergence validity of the FACT-L and the LCSS among newly diagnosed lung cancer patients who smoke. This data were collected and analyzed from a larger study examining smoking behavior among newly diagnosed lung cancer patients ( n = 51). Descriptive statistics were calculated on the FACT-L and LCSS scores, internal consistency was assessed by estimating Cronbach's alpha coefficients, and Pearson correlation coefficients were estimated between the two scales. Internal consistency coefficients demonstrated good reliability for both scales, and the two instruments demonstrated a strong correlation, suggesting good convergence validity. Either of these instruments are appropriate measures for QOL in lung cancer patients who smoke. Given the conceptual difference between the two instruments, it is important to carefully consider the research aims when selecting the appropriate QOL measurement instrument.

The effectiveness of voice rehabilitation on vocalization in post-laryngectomy patients: a systematic review.

Laryngeal cancer is one of the most common malignant neoplasia of the head and neck. Its incidence has been increasing steadily all over the world. Many patients will undergo total laryngectomy with or without radical neck dissection after being diagnosed. After this surgery, normal speech is lost, and a permanent stoma in the middle of the neck is left. Therefore, voice rehabilitation is one of the most difficult challenges that these patients must overcome. In order to support the patients, otolaryngologists, nursing specialists and speech pathologists have explored several different methods for voice rehabilitation. Variations exist on the approaches of rehabilitation and indicators selected to measure the effectiveness. There is a need to undertake a systematic review to ascertain the effectiveness regarding different voice rehabilitation programs for post-laryngectomy patients. To critically analyse the literature and present the best available evidence related to the effectiveness of voice rehabilitation program on post-laryngectomy patients. A three-step search strategy was utilised. An initial limited search of MEDLINE and CINAHL databases was undertaken followed by an analysis of the text words contained in the title and abstract to identify the optimal index terms. A second extensive search using all identified keywords and index terms was then undertaken. Thirdly, the reference list and bibliographies of all identified reports and articles were searched for additional studies. The measurement index included voice intelligibility, volume, clarity, quality of voice, patients' satisfaction, quality of life, etc. The search included reports in English and Chinese. The review considered any randomised controlled trials (RCT) that addressed voice rehabilitation methods in post-laryngectomy patients. In the absence of RCTs, other quantitative research designs, such as non-randomized controlled trials, cohort studies, and case-controlled studies were considered for inclusion. Full copies of articles considered to meet the inclusion criteria were obtained for critical appraisal by two reviewers using the CASP (Critical Appraisal Skills Program) and McMaster scales. We utilised the 60% fulfilling of the evaluation scale items as the cut off point and articles with a quality score less than 60% were excluded. Details of eligible trials were extracted and summarised by two reviewers independently using standardised data extraction tools developed by the Joanna Briggs Institute. Two hundred and four papers in English and 11 papers in Chinese were initially selected and reviewed for inclusion through the titles and abstracts. Sixty-nine full reports of these papers were then retrieved. Twenty-two articles were included for the critical appraisal. Different voice rehabilitation methods for laryngectomees were investigated in the included studies including esophageal voice, electrolaryngx voice and surgical voice restoration. One cohort study, 5 prospective studies, 5 retrospective studies and 11 descriptive studies were included. Due to the heterogeneity of included studies, meta-analysis was not possible. Therefore, the results were presented in narrative summary. The following main findings were identified:˙ At present, ES (esophageal speech), EL (electrolarynx), and TEP (tracheoesophageal) were the commonly used voice rehabilitation methods with TL (total laryngectomy) patients.˙ Among these three methods, the success rate of EL and TEP is much higher than ES.˙ The intelligibility and speech quality of EL was lower than TEP.˙ Patient satisfaction and self-assessed quality of life was better in TEP group.˙ The objective index was similar between excellent TEP and ES patients. EL is the easiest vocal rehabilitation method for TL patients to use as it requires little training and does not limit the patients. But patients' satisfaction was lower, due to the mechanical voice and noise. ES is the hardest vocal rehabilitation method to learn. It needs a long period of time to practice and requires the patient to be in good physical condition and to be relative young. The success rate was relatively lower, however it is the most commonly used rehabilitation method in developing countries due to low cost. TEP is the most commonly used voice rehabilitation method in developed countries. It is a surgical method that could be performed as either a primary procedure or secondary procedure. Reported patient quality of life and satisfaction following TEP were the best, however there are complications and the frequent replacement of the prostheses is an important problem yet to be solved. The health care workers should understand the advantages, disadvantages and impact of each voice rehabilitation method in detail. So that they are able to help laryngectomees decide on the most appropriate method according to their age, sex, physical condition, job, economic status, and so on. Further high quality comparative studies of the effectiveness among ES, EL and TEP vocal rehabilitation methods are needed, especially when used concurrently with the subjective and objective outcome indexes. Decreasing the complications of TEP and how to improve the life-duration of TEP requires further investigation. More research should be conducted into patients living in developing countries where health care resources may be limited.

Editorial Comment on: Time, Symptom Burden, Androgen Deprivation, and Self-Assessed Quality of Life after Radical Prostatectomy or Watchful Waiting: The Randomized Scandinavian Prostate Cancer Group Study Number 4 (SPCG-4) Clinical Trial

Editorial Comment on: Time, Symptom Burden, Androgen Deprivation, and Self-Assessed Quality of Life after Radical Prostatectomy or Watchful Waiting: The Randomized Scandinavian Prostate Cancer Group Study Number 4 (SPCG-4) Clinical Trial

Personal, familial and social resources and health-related quality of life in children and adolescents with chronic conditions

The present publication describes chronic conditions of children and adolescents (asthma, ADHD, obesity) in relation to personal, familial and social resources and to health-related quality of life (HRQOL). A database of these investigations is the German health interview and examination survey of children and adolescents (KiGGS), which is representative for 0 to 17 year-olds. The above mentioned chronic conditions occur frequently in this age group and are assumed to have an influence on quality of life and to be related to a lower level of protective factors. The investigations used the data of 6813 children and adolescents within the age group of 11 to 17 who participated in the KiGGS study. Information about diagnosed chronic conditions was given by the parents within the framework of the computerassisted medical interview (CAPI) and by completing questionnaires. The personal, familial and social protection factors as well as the quality of life were assessed by the questionnaires, filled in by the adolescents themselves. Instruments used were the Social Support Scale, the Family Climate Scale and KINDL-R. Children and adolescents with asthma seem to have no deficits in the health-related quality of life and in the field of protective factors. This differs from the situation of the obese children as well as from the children with ADHD. Both groups show significant deficits in the health-related quality of life and protection factors. The chronic conditions investigated show remarkable differences in the scale values for measuring protective factors and health-related quality of life. Possible explanations are: For asthma as a chronic disease with somatic manifestation effective treatments and therapies exist, so that it has nearly no influence on the self-assessed quality of life. ADHD and obesity result in a decrease of quality of life and in the field of protective factors, possibly caused by social stigmatisation, isolation and demotivation of the concerned children and adolescents. Therefore it is important to support those children and adolescents to cope with their disease-related problems. The results illustrate that in addition to the immediate effects of chronic conditions on the concerned children and their families, it is the quality of life and the familial and social environment that should be specifically addressed in further studies.

Dental Treatment Improves Self‐Rated Oral Health in Homeless Veterans – A Brief Communication

The aim of this study was to assess homeless veterans' perception of their oral health and the impact that oral disease and treatment have on self-assessed quality of life. Outcomes included measures of general and oral-specific quality of life and functional status. Single-item self-report of oral health and the General Oral Health Assessment Index were assessed at baseline and after treatment. One hundred and twelve veterans completed the baseline questionnaire, and 48 completed the follow-up. Veterans who were eligible for ongoing dental care had improved General Oral Health Assessment scores, while patients who received only emergency dental care saw a decreased score (2.46 versus -2.12). General Oral Health Assessment improvement was significantly related to fewer teeth at baseline (18 versus 23), a lower baseline General Oral Health Assessment (23.6 versus 28.1), having a denture visit (22 versus 35 percent), and improvement in self-reported oral health (25 versus 42 percent). There was significant improvement in homeless veterans'perceived oral health after receiving dental care.

Clinical holistic medicine in the recovery of working ability. A study using Antonovsky salutogenesis

patients with low or very low self-assessed work ing ability were treated with psychodynamic short t ime therapy complemented with body-work. They received in average 20 sessions at a prize of 1600 EURO. The Body Work was inspired by Marion Rosen and helped the patients to confront old emotional pain from childhood trauma repressed to the body-mind. Results: 52.5% (95% CI: 36.1% - 68.5%) of patients recovered their self-assessed working ability (from 4.2 to 2 .4 up the five point Likert scale (p 500. The responders improved their self-assessed physical health (from 3.3 to 2.6; 0.6 step up the five point Likert Scale , p=0.01), self-assessed mental health (from 3.8 to 2.5, p<0.01), self-esteem (from 3.4 to 2.5, p<0.01), self-assessed quality of life (QOL1) (from 3.7 to 2.4p<0.01), QOL measured by QOL5 (from 3.3 to 2.6p<0.01), the quality of relations (from 3.2 to 2.6p<0.01), genera l ability of functioning (from 3.5 to 2.5; p<0.01). Combining quality of lif e, health, and ability showed large improvements of the patient's whole life (p<0.01). The simultaneous improvement in all aspects of life can be explained as caused by existentia l healing (Antonovsky salutogenesis). The patients of this study have bee n strongly motivated, and willing to endure the str ong emotional pain provoked by the therapy.

Lebens- und Versorgungsqualität von Mitgliedern des Sächsischen Landesverbandes der Deutschen Multiple Sklerose Gesellschaft

Although multiple sclerosis is the most common neurological inflammatory disease among young adults in Europe and Northern America, population-based studies on the quality of life and care of persons affected by multiple sclerosis have not yet been frequently published in Germany. The aim of this study was to assess the quality of life and care as seen by members of the Saxonian branch of the German Society for Multiple Sclerosis. Between October 2002 and January 2003 a representative survey of the members (n=757) of the Saxonian branch of the German Society for Multiple Sclerosis was conducted on the basis of a written questionnaire. Multiple linear and logistical regression analyses were used to find determinants of the self-assessed quality of life and medical care. As a result of these multivariate analyses, the strong impact of disease-specific factors on the physical, mental and social well-being of participants was confirmed. The study hereby revealed that with disease progression the quality of life of affected persons, particularly elderly and invalid patients, patients with bladder and stool problems, and patients with mental problems, was significantly reduced. For these patients symptomatic treatment, which can mitigate the serious consequences of the disease, is of high importance. The fact that these patient groups partly reported a stronger dissatisfaction with their medical care situation indicates that it may not be adequate. With regard to drug treatment with beta interferons and azathioprin, a strong difference was observed between the number of patients who had already taken a beta interferon in the past and the number of patients who were currently on beta interferon, which indicates a high rate of patients breaking off the treatment. The results of this study suggest that there is potential for improvement of the medical and therapeutic care of persons affected by Multiple Sclerosis in Saxony. Adequate care, which takes into consideration the individually diverging disease courses, symptoms and psychosocial consequences, is required in order to maintain or optimize the quality of life.

Mobility, Perceptions of Quality of Life and Neighbourhood Stability in Saskatoon

Why people move, their well-being or self-assessed quality of life and the impact that this has on the stability of neighbourhoods are linked in many ways. One of the expected outcomes related to the attachment to and meaning of place is the level of intra-urban mobility by individuals and families. Those who have negative or neutral feelings towards the place they reside are expected to experience a greater level of intra-urban mobility. The objective of this paper is to examine the relationship between residential mobility and perceived well-being or self-assessed quality of life in Saskatoon, Saskatchewan across three clusters of neighbourhoods representing different socio-economic status (SES) (low, middle and high). The paper begins with a review of the literature on residential mobility and highlights concepts such as the life-cycle, social cohesion and social isolation. It employs data from three sources: a telephone survey collected from residents in 2001, a series of face-to-face interviews and 2001 Census data. The data are analysed statistically using a mixed model approach. The results show that mobility is an important feature of Saskatoon, and that a significant difference exists in the length of residency among the three neighbourhood clusters. However, the analysis indicates that there is no relationship between residential mobility and well-being as measured by self-reported quality of life and health.

Evaluation of vision-specific quality of life in albinism

Introduction: Office measurements of visual acuity do not necessarily reflect daily visual function and health status. We evaluated vision-targeted health-related quality of life (QOL) in albinism with a self-administered tool. Methods: Consenting participants completed the NEI Visual Function Questionnaire (NEI-VFQ-25) consisting of 25 questions about QOL and 12 questions about well-being. Best-corrected binocular visual acuity (BCVA) and type of albinism were recorded. Results: Fourteen males and 25 females with albinism completed the study. Median age was 30 years (range, 18 to 79 years). Mean BCVA was 20/95 (range, 20/20 to 20/320). Eighteen (46%) reported that they were currently driving. Participants perceived moderate problems with their general vision (mean subscale score, 58.97). BCVA was moderately correlated with overall NEI-VFQ-25 scores (r = 0.443). Most notable impairment was noted on distance acuity, vision-specific mental health, and vision-specific role difficulties subscales (mean subscale scores, 67.09, 67.07, and 68.27, respectively). Differences by gender were insignificant. Ceiling effect >80% was noted for ocular pain, vision-specific dependency, and color vision. Discussion: Self assessment of QOL with the NEI-VFQ-25 has been used in groups with specific vision disorders. The vision-related results reported herein are similar to those with moderate to severe diabetic retinopathy, although those with albinism reported better general health. Conclusions: The NEI-VFQ-25 is a valuable method to evaluate self-reported effects of vision-related QOL in albinism.

Quality of Life Following Vestibular Schwannoma Surgery

This study evaluates quality of life (QOL) in patients following surgery for vestibular schwannoma (VS) using the Glasgow Benefit Inventory (GBI), and a pain questionnaire. The questionnaires were sent to 95 patients who had undergone surgery at our institution. The impact of several factors on self-assessed QOL was also evaluated. The response rate was 72 %. Considering overall QOL, 30 % patients reported that QOL became better, 56 % patients said it was worse, and in 14 % patients it remained the same. No differences in postoperative QOL were found when comparing side, gender, age, tumor size, hearing preservation, or post-operative facial function. Deterioration of postoperative QOL was less frequent in patients with vertigo and brain stem compression before surgery. Post-operative pain was associated with poorer QOL. QOL becomes worse in several cases after surgery for VS. However, patients must understand that the main goal of VS surgery is to avoid life-threatening complications or death.

Clinical Holistic Medicine (Mindful,Short-Term Psychodynamic Psychotherapy Complemented with Bodywork) in the Treatment of Experienced Mental Illness

Short-term psychodynamic psychotherapy (STPP) complemented with bodywork improved 31 of 54 patients (57.4%, 95% CI: 43.21–70.77%) who rated themselves mentally ill before treatment. Calculated from this we find 1.41 < NNT < 2.31; we estimate NNH > 500. Of the 54 patients, 40% had already had traditional treatment that did not help them. Bodywork helped the patients to confront repressed painful feelings from childhood and this seemingly accelerated and improved the therapy. The patients received in average 20 sessions over 14 months at a cost of 1600 EURO. For the treatment responders, all measured aspects of life (on a five point Likert Scale) improved significantly, simultaneously, and radically: somatic health (from 2.9 to 2.3), self-esteem/relationship to self (from 3.5 to 2.3), relationship to partner (from 4.7 to 2.9 [no partner was rated as “6”]), relationship to friends (from 2.5 to 2.0), ability to love (from 3.8 to 2.4), self-assessed sexual ability (from 3.5 to 2.4), self-assessed social ability (from 3.2 to 2.1), self-assessed working ability (from 3.3 to 2.4), and self-assessed quality of life (from 4.0 to 2.3. Quality of life as measured with QOL5 improved (from 3.6 to 2.3 on a scale from 1 to 5; p < 0.001). This general improvement strongly indicated that the patient had healed existentially, i.e., had experienced what Aaron Antonovsky (1923–1994) called “salutogenesis”, defined as the process exactly the opposite of pathogenesis. For the treatment responders, the treatment provided lasting benefits, without the negative side effects of drugs. A lasting, positive effect might also prevent many different types of problems in the future.

Clinical Holistic Medicine (Mindful, Short-Term Psychodynamic Psychotherapy Complemented with Bodywork) in the Treatment of Experienced Physical Illness and Chronic Pain

We investigated the treatment effect of psychodynamic short-term therapy complemented with bodywork on patients who presented with physical illness at the Research Clinic for Holistic Medicine in Copenhagen. Psychodynamic short-term therapy was complemented with bodywork (Marion Rosen) to help patients confront old emotional pain from childhood trauma(s). Patients were measured with a five-item quality of life and health questionnaire (QOL5), a one-item questionnaire of self-assessed quality of life (QOL1), and four questions on self-rated ability to love and to function sexually, socially, and at work (ability to sustain a full-time job). Most of the patients had chronic pain that could not be alleviated with drugs. Results showed that 31 patients with the experience of being severely physically ill (mostly from chronic pain), in spite of having consulted their own general practitioner, entered the study. The holistic approach and body therapy accelerated the therapy dramatically and no significant side effects were detected. After the intervention, 38.7% did not feel ill (1.73 < NNT < 4.58) (p = 0.05). Psychodynamic short-term therapy complemented with bodywork can help patients. When the patients responded to the therapy, the self-assessed mental health, relationship with partner, ability to work, self-assessed quality of life, relationships in general, measured QOL (with the validated questionnaire QOL5), and life's total state (mean of health, QOL and ability) were significantly improved, statistically and clinically. Most importantly, all aspects of life were improved simultaneously, due to induction of Antonovsky-salutogenesis. The patients received in average 20 sessions over 14 months at a cost of 1600 EURO. For the treatment responders, the treatment seemingly provided lasting benefits.

Outcome Measures in Childhood Idiopathic Thrombocytopenic Purpura: Relationship of Bleeding Severity, Quality of Life, and Platelet Count.

Idiopathic thrombocytopenic purpura (ITP) is one of the most common disorders requiring the attention of a pediatric hematologist. The most feared outcome of ITP is intracranial hemorrhage (ICH), which fortunately is a rare occurrence in children. Although a rise in platelet count and presumed reduction in risk of ICH are stated therapeutic aims, it is equally important to identify and understand additional outcome measures which are subject to change in this population. These include health-related quality of life (QoL), treatment side effects, cost, and bleeding severity. A QoL questionnaire for pediatric acute and chronic ITP has recently been developed and validated. During the validation study (Pediatr Blood Cancer , 46:692, 2006), grading of hemorrhage and platelet count were also assessed. This report describes the results of a secondary data analysis using the validation study database. Our purpose was to assess the relationship between bleeding severity and QoL, previously not reported. Ninety children (mean age 9.7 yrs.) with ITP (41 acute, 49 chronic) were prospectively enrolled at six North American centers. Platelet count and bleeding severity were measured at baseline. Bleeding severity was assessed using a modification of a previously published grading instrument (J Pediatr , 141:683–8, 2002) where each patient was assigned a grade of 0 (no bleeding) to 5 (life-threatening bleeding) based on the overall amount of hemorrhage in the previous twenty-four hours. QoL scores were obtained by proxy-report by parents on behalf of their child and self-report by children age seven and older. Parents also reported their own QoL. Using a two- tailed Pearson correlation, the bleeding severity grade was weakly correlated with the platelet count in the children with chronic ITP (r= 0.20, p<0.001), but this relationship did not reach significance for children with acute ITP (r= 0.07, p= 0.09). The severity of bleeding did not correlate with the child's self-reported QoL in either acute (r= 0.005) or chronic ITP (r=0.03). Parents' self-assessed QoL did not reflect bleeding severity when their children had either acute (r= 0.03) or chronic ITP (r= 0.006). The parents' perception of the child's QoL using a proxy score was also poorly correlated with bleeding severity in acute (r= 0.02) and chronic ITP (r= 0.01). In summary, the bleeding severity score did not correlate with the QoL experienced by either the patient or the family in any setting. These results indicate that many factors in addition to bleeding signs may impact the children and parents, such as anxiety about the disease, length of hospital stay, frequency of visits to the physicians' office, and medication side effects. These findings suggest that the inclusion of multiple outcome measures enhances the scope of our knowledge and should be used in clinical care and research study design in order to understand the full spectrum of disease impact.

Quality of life with vitiligo: Comparison of male and female muslim patients in Iran

Vitiligo is a chronic pigmentary disorder of the skin that, although not life threatening, may considerably influence the psychological well-being of patients. It has been suggested that vitiligo patients suffer from low self-esteem, poor body image, and poor quality of life (QOL). The aim of this study was to explore and compare QOL in male and female patients with vitiligo in Iran. To obtain the patients' self-assessment of QOL, we used a 17-item multiple-choice questionnaire based on the Dermatology Life Quality Index (DLQI). All statistics used 2-way analysis of variance comparisons with an (alpha-risk of 5%. DLQI scores were assessed using nonparametric comparisons, and qualitative variables were compared with xi(2) testing. Categorical regression analyses were also used as an exploratory aim. A total of 77 Muslim patients with vitiligo (53 females, 24 males; mean age, 29.3 years) were included in this survey. The mean (SD) DLQI score of 42.9 (11.4) for females was lower than that of 51.6 (8.8) for males (P = 0.002). Female patients experienced significantly more impairment of general and psychological health (P < 0.003), social relationships (P < 0.02), and sexual activity (P < 0.001) than did male patients. This study indicates the specific areas of patients' lives that are most affected by vitiligo. Gender and location of disease independently affect QOL in Muslim patients in Iran. Women with vitiligo experience greater QOL impairment than their male counterparts.

Quality of life following allogeneic stem cell transplantation, comparing parents' and children's perspective

There is insufficient knowledge about the quality of life (QoL) among children after allogeneic stem cell transplantation (SCT). We recently reported an overall, good self-assessed QoL and health in 52 children who were three yr or more beyond SCT. The focus of this paper is the QoL as assessed by their parents, of whom 42 participated in the study. Using Swedish child health questionnaire (SCHQ)-PF50, parents rated their children's QoL lower on both the psychosocial (p<0.001) and physical summary scales (p<0.001) than the normative group of parents of children without chronic disease. Although essentially following each other, parent scores tended to be lower than children's own SCHQ-CF87 scores, particularly in the domains 'role socially due to physical limitations' (p<0.01) and 'self-esteem' (p<0.05). In the 'bodily pain' domain, patients' and parents' low scores agreed. The child's condition had a greater impact on parents' emotional situation than in the norm population (p<0.001). The severity of the child's physician-rated late effects (p<0.05) or of self-assessed subjective symptoms (p<0.01-0.05) was associated with a lower parental rating of the child's QoL. High Lansky or Karnofsky scores corresponded, respectively, to higher psychosocial (p<0.05) and physical (p<0.05) summary scores. It is concluded that as children, parents, and clinicians do not necessarily adopt similar views of a child's illness and of its impact on the child's life, clarity with regard to who is responsible for assessing the child's QoL is crucial when interpreting pediatric QoL studies.

Lebensqualitätsmessung mit „Selbsteinschätzung der Lebensqualität (SAQOL)” bei Patienten mit Bronchialkarzinom und COPD: Lebensqualität hat Einfluss auf Überlebenszeit

Lung cancer and chronic obstructive pulmonary disease (COPD) often occur concomitantly. Whilst there are several questionnaires relating to COPD that have been translated into German (CCOPDQ, CRQ, SGRQ) there is a need for a short instrument measuring the impact of the concomitant diseases or intervention on a patient's Quality of Life specifically in German language. As there is to date no genuine German questionnaire neither in general, nor in detail for both, lung cancer and the often concomitant COPD, we created and tested an appropriate single instrument. The feasibility and validity of a short, self-administered quality of life questionnaire for use with patients diagnosed with COPD and/or pulmonary malignancies was evaluated. The 27 questions of Self Assessment Quality of Life in Lung Diseases (SAQOL) questionnaire were issued to out-patients with lung cancer (18 females, 75 males, mean 62.6 years, 18 to 81), 54 of with concomitant COPD. Correlations to comparable domains of the tumour-related QLQ-C30 of EORTC were good in cancer patients. Quality of life impact scores in the shorter and organ specific SAQOL domains showed even higher values than the QLQ C-30. A higher quote of Quality of life impaction was related to a poorer prognosis despite comparable tumour stages. There was a relevant impact related to the presence of COPD in addition to lung cancer. To investigate the validity in severe COPD an English version of the questionnaire was applied in the Respiratory Unit, Adelaide Australia, together with the Nottingham Health Profile in patients with long-term oxygen therapy (n = 20), which correlated well with the lung specific domains of SAQOL. We conclude that SAQOL is an easy to handle questionnaire, which shows on the one hand good correlation to the tumour-related domains of the broadly investigated and reliable QLQ C30, and on the other hand to the long-term used and valid lung specific generic Nottingham Health Profile in COPD. The important influence COPD in quality of life impact highlights the need for an organ specific questionnaire for both, lung cancer and obstructive airway disease. This important factor for quality of life alteration seems to be underestimated in other generic questionnaires or it needs the issue of at least two different and more time consuming instruments for adequate assessment. Additionally a high degree of quality of life impaction was linked to a short survival in our study patients with advanced lung cancer.

Colorectal Tumour Microsatellite Instability Test Results: Perspectives from Patients

PurposeTo determine which individuals with colorectal cancer (CRC) were interested in knowing the results of their tumour microsatellite instability (MSI) and immunohistochemistry (IHC) testing. We were also interested in the patients' reasons for choosing to learn their results and in the impact of those results on overall self-assessed quality of life.Patients and MethodsCRCs from 414 individuals were assayed for MSI and IHC for DNA mismatch repair gene products (MLH1, MSH2, MSH6). Individuals were invited to learn their MSI/IHC results. They randomly received either brief or extended educational materials about the testing and a pretest survey to learn reasons for their interest and to assess their pretest quality of life.ResultsOf the 414 individuals, 307 (74%) chose to learn their results. There was no significant difference in interest in knowing test results according to gender, age, educational level, or family history of colon cancer. The level of detail in the information piece received by the patients did not influence their desire to know their test results. Self-assessed quality of life was not altered by receiving results and was not correlated with the test outcome.ConclusionsIndividuals with colorectal cancer had a high level of interest in learning their individual MSI/IHC test results and did not seem deterred by the inherent complexity or ambiguity of this information. Regardless of test outcome, results did not significantly affect self-assessed quality of life. Further studies are needed to assess comprehension of results and behavioural changes resulting from the learning of MSI/IHC results.

Self-assessed quality of life after acoustic neuroma surgery.

The aim of this study was to determine if factors such as postoperative hearing, facial function, headaches, or other factors have an impact on self-assessed quality of life (QOL) after acoustic neuroma surgery. The SF-36 and seven additional questions on the impact of surgery on the QOL were sent to 135 consecutive patients who had undergone acoustic neuroma surgery. The Spearman rho correlations were calculated for each of the eight categories of the SF-36 (general health, physical functioning, physical role limitations, emotional role limitations, mental health, energy/vitality, pain, social functioning). The results were correlated with patients' sex, age, persistent headache, years since surgery, postoperative hearing level, and facial function. The response rate was 74.8%. The transformed scores of the eight categories of the SF-36 were lower than age-matched healthy controls in approximately half of the categories. The strongest trend toward lower scores with statistical significance in two categories was persistent headaches. Some categories demonstrated trends toward lower scores with females or age older than 55 years. Postoperative hearing and facial functioning, and time since surgery showed no statistically significant impact on QOL measured by the SF-36. Responses to the additional questions indicate that hearing, facial function, and headache influenced people's feelings about surgery and had an impact on their return to work. The QOL scores are not consistently lower than population normative values compared with different normative studies. The strongest correlation was between the presence of persistent headache and QOL. Other correlations were not consistent in all categories, and few were statistically significant. These trends in some categories do not explain the difference seen between patients after acoustic neuroma surgery in this study and normal populations in other studies.

Budesonide versus mesalamine for maintaining remission in patients refusing other immunomodulators for steroid-dependent Crohn's disease

Background & Aims: To compare the efficacy of controlled-release budesonide capsules with that of mesalamine for maintaining remission and improving quality of life (QOL) in patients with steroid-dependent Crohn's disease. Methods: Fifty-seven patients (25 men; mean age, 32 ± 10.1 yr) with quiescent steroid-dependent Crohn's ileitis, ileocolitis, or colitis (Crohn's disease activity index <150) entered a prospective, investigator-blind trial. Patients were eligible for treatment with azathioprine but had not consented or had developed side effects. Patients were randomized to receive budesonide 6 mg/day (n = 29) or mesalamine 1 g 3 times/day (n = 28). Follow-up assessments were made every 2 months for up to 1 year or until relapse. At each visit, quality of life (QOL) was assessed using the Inflammatory Bowel Disease Questionnaire (IBDQ). Results: There were no significant differences in baseline clinical characteristics between the study groups. The 1-year relapse rate was significantly lower in the budesonide group than in the mesalamine group (55% vs. 82%; 95% confidence interval, 12.4%-41%; P = 0.045). Patients assigned to budesonide also remained in remission longer (241 ± 114 days vs. 147 ± 117 days; 95% confidence interval, 32.7-155.3 days; P = 0.003). Compared with mesalamine, budesonide treatment also was associated with a better QOL throughout the study (mean total IBDQ scores 165 ± 36 vs. 182 ± 28, respectively; 95% confidence interval, −0.4 to 34.4, P = 0.0001). This advantage was confirmed in patients' self-assessed QOL scores. Conclusions: Over a 1-year period, controlled-release budesonide was significantly more effective than mesalamine for maintaining remission and improving the QOL of patients with steroid-dependent Crohn's disease.

A response to Dempster and Donnelly 'Outcome Measurement and Service Evaluation--a note on research design': The importance of understanding social care outcomes

Dempster and Donnelly (vol 32 (3) of this journal) described the use of an adaptation of the PGI (Patient Generated Index) to assess the impact of an intensive domiciliary care scheme for people discharged from hospital. Their example raises many import ant issues at a time when intermediate care is high on the Government agenda for older people, and large sums of money are being spent on providing, and evaluating, social and health care after hospital discharge (Department of Health, 2001). Dem pster and Donnelly argued that an increase in scores on an individualized quality of life instrument did not demonstrate that services improved quality of life because, if people were asked to rate the impact of services on quality of life dimensions, then the overall impact from their perspective was nil. I disagree that an improvement in quality of life would be generally accepted as evidence of service effectiveness. Without comparison with a matched group who had not received the service, there could be many other explanations. An observed improvement in self-assessed quality of life might not be a consequence of the service, it could simply be the result of natural recovery over time, or other external factors. I imagine Dempster and Donnelly would agree with this. Dempster and Donnelly suggest that specifically asking people to rate the consequences of services on aspects of quality of life gets us closer to knowing whether there were truly service effects. With this I agree to some extent, although I think their method of asking the question and rating the answer is such as to miss the impacts of a service such as intensive domiciliary care. In their example the impacts assessed in this way are nil. Are we to assume that the service has in some way failed in the eyes of recipients?