Marianne Sullivan

International quality of life assessment (IQOLA) project

The International Quality of Life Assesment (IQOLA) Project is a 4-year project to translate and adapt the widely used MOS SF-36 Health Survey Questionnaire in up to 15 countries and validate, norm, and document the new translations as required for their use in international studies of health outcomes. In addition to the eight-scale SF-36 health profile, the project will also validate psychometrically based physical and mental health summary scores, as well as health utility indexes incorporating SF-36 scales for use in cost-utility studies.

A prospective multicentre study in Sweden and Norway of mental distress and psychiatric morbidity in head and neck cancer patients

SummaryA Swedish/Norwegian head and neck cancer study was designed to assess prospectively the levels of mental distress and psychiatric morbidity in a heterogeneous sample of newly diagnosed head and neck cancer patients. A total of 357 patients were included. The mean age was 63 years, and 72% were males. The patients were asked to answer the HAD scale (the Hospital Anxiety and Depression scale) six times during 1 year. The number of possible or probable cases of anxiety or depression disorder was calculated according to standardized cut-offs. Approximately one-third of the patients scored as a possible or probable case of a major mood disorder at each measurement point during the study year. There were new cases of anxiety or depression at each time point. The anxiety level was highest at diagnosis, while depression was most common during treatment. Females were more anxious than males at diagnosis, and patients under 65 years of age scored higher than those over 65. Patients with lower performance status and more advanced disease reported higher levels of mental distress and more often scored as a probable or possible cases of psychiatric disorder. Our psychometric analyses supported the two-dimensional structure and stability of the HAD scale. The HAD scale seems to be the method of choice for getting valid information about the probability of mood disorder in head and neck cancer populations. The prevalence of psychiatric morbidity found in this study emphasizes the importance of improved diagnosis and treatment.

A prospective study of quality of life in head and neck cancer patients. Part I : At diagnosis

Purpose A Swedish and Norwegian study was designed to examine health‐related quality of life (HQL) in patients with head and neck cancer (head and neck) at diagnosis and during treatment and rehabilitation. The overall aim was to examine the impact on HQL at diagnosis depending on tumor location, stage, sex, and age (part I) and to describe HQL longitudinally and determine for which patients and during which period HQL deteriorated most (part II). This article presents the results at diagnosis.

Quality-of-Life Effects of Psychosocial Intervention in Patients with Head and Neck Cancer

METHODS: Two studies of psychosocial interventions in head and neck cancer patients at different stages of their disease were performed. We explored the feasibility and effectiveness of different approaches, offered for the first time to this population. The first study concerned long-term group psychological therapy for patients with newly diagnosed head and neck cancer. Quality of life was measured longitudinally for 1 year and compared with that of a control group. The second study comprised a short-term psychoeducational program 1 year after treatment for head and neck cancer. Quality-of-life assessments were made repeatedly from diagnosis until 1 month after the intervention. RESULTS: Thirteen patients started the psychological group therapy, and 8 of them completed both the intervention and evaluation procedure. The quality of life of the therapy group improved more than that of a control group in most areas measured during the study year, in particular psychiatric morbidity, social functioning, emotional functioning, and global quality of life. The results indicate benefits from the therapy, although the therapy group scored worse than the control group at diagnosis. Most of the variables representing functioning and symptoms improved after the 1-week psychoeducational program, especially items reflecting “trouble eating” and “problems enjoying your meals.” Patients judgments of the intervention quality indicated satisfaction with all separate elements, mostly education, about cancer and the opportunity to socialize with the other guests. CONCLUSION: These pilot studies suggest that head and neck cancer patients can benefit from different psychosocial interventions. Quality-of-life questionnaires were well accepted and sensitive to changes during the studies. Thus our early findings seem promising and would justify confirmation in larger studies. (Otolaryngol Head Neck Surg 1999;120:507-16.)

Use of differential item functioning analysis to assess the equivalence of translations of a questionnaire

In cross-national comparisons based on questionnaires, accurate translations are necessary to obtain valid results. Differential item functioning (DIF) analysis can be used to test whether translations of items in multi-item scales are equivalent to the original. In data from 10,815 respondents representing 10 European languages we tested for DIF in the nine translations of the EORTC QLQ-C30 emotional function scale when compared to the original English version. We tested for DIF using two different methods in parallel, a contingency table method and logistic regression. The DIF results obtained with the two methods were similar. We found indications of DIF in seven of the nine translations. At least two of the DIF findings seem to reflect linguistic problems in the translation. ‘Imperfect’ translations can affect conclusions drawn from cross-national comparisons. Given that translations can never be identical to the original we discuss how findings of DIF can be interpreted and discuss the difference between linguistic DIF and DIF caused by confounding, cross-cultural differences, or DIF in other items in the scale. We conclude that testing for DIF is a useful way to validate questionnaire translations.

Prospective, longitudinal quality-of-life study of patients with head and neck cancer: A feasibility study including the EORTC QLQ-C30☆☆☆

Despite modern advances in the treatment of head and neck cancer, the survival rate fails to improve. Considering the different treatment modalities involved, quality of life has been thought of as an additional end point criterion for use in clinical trials. A Nordic protocol to measure the quality of life of head and neck cancer patients before, during, and after treatment was established. Before the study, a pilot study was done with this protocol. The main purpose of this pilot study was to find out whether this cancer population would answer quality-of-life questionnaires repeatedly (six times) over a 1-year period and whether the chosen questionnaires-a core questionnaire (European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30)), a tumor-specific questionnaire, and a psychological distress measure (Hospital Anxiety and Depression scale (HAD))-were sensitive for changes to functions and symptoms during the study year. The results presented in this article all refer to the pilot study. Forty-eight consecutive patients agreed to participate in the study. The most common tumor locations were the oral cavity (17) and the larynx (12). Almost all patients received combined treatment: 45 of 48 radiation therapy, 18 of 48 chemotherapy, and 17 of 48 surgery. After the primary treatment, 40 patients had complete tumor remission. Four of the 48 patients did not answer any questionnaires and were therefore excluded from the study. Of the remaining 44 patients, 3 died during the study year, and another 6 withdrew for various reasons. Thirty-five (85%) of the 41 patients alive at the 1-year follow-up answered all six questionnaires and thus completed the study. Mailed questionnaires were used throughout the study. All questionnaires were well accepted and found to be sensitive to changes during the study year. The greatest variability was found for symptoms and functions related specifically to head and neck cancer. The symptoms were swallowing difficulties, hoarse voice, sore mouth, dry mouth, and problems with taste. They all showed the same pattern, with an increase of symptoms during and just after finishing the treatment. The HAD scale revealed a high level of psychological distress, with 21% probable cases of psychiatric morbidity at diagnosis. In conclusion, it was shown that the study design and questionnaires were feasible for the forthcoming prospective quality-of-life assessment of Swedish and Norwegian head and neck cancer patients.Despite modern advances in the treatment of head and neck cancer, the survival rate fails to improve. Considering the different treatment modalities involved, quality of life has been thought of as an additional end point criterion for use in clinical trials. A Nordic protocol to measure the quality of life of head and neck cancer patients before, during, and after treatment was established. Before the study, a pilot study was done with this protocol. The main purpose of this pilot study was to find out whether this cancer population would answer quality-pf-life questionnaires repeatedly (six times) over a 1-year period and whether the chosen questionnaires—a core questionnaire (European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30)), a tumor-specific questionnaire, and a psychological distress measure (Hospital Anxiety and Depression scale (HAD))—were sensitive for changes to functions and symptoms during the study year. The results presented in this article all refer to the pilot study. Forty-eight consecutive patients agreed to participate in the study. The most common tumor locations were the oral cavity (17) and the larynx (12). Almost all patients received combined treatment: 45 of 48 radiation therapy, 18 of 48 chemotherapy, and 17 of 48 surgery. After the primary treatment, 40 patients had complete tumor remission. Four of the 48 patients did not answer any questionnaires and were therefore excluded from the study. Of the remaining 44 patients, 3 died during the study year, and another 6 withdrew for various reasons. Thirty-five (85%) of the 41 patients alive at the 1-year follow-up answered all six questionnaires and thus completed the study. Mailed questionnaires were used throughout the study. All questionnaires were well accepted and found to be sensitive to changes during the study year. The greatest variability was found for symptoms and functions related specifically to head and neck cancer. The symptoms were swallowing difficulties, hoarse voice, sore mouth, dry mouth, and problems with taste. They all showed the same pattern, with an increase of symptoms during and just after finishing the treatment. The HAD scale revealed a high level of psychological distress, with 21% probable cases of psychiatric morbidity at diagnosis. In conclusion, it was shown that the study design and questionnaires were feasible for the forthcoming prospective quality-of-life assessment of Swedish and Norwegian head and neck cancer patients.

Obesity‐related coping and distress and relationship to treatment preference

OBJECTIVESnThe primary purpose was to define obesity-related strategies for coping with psychological problems connected with obesity. We also wanted to identify obesity-related distress and explore the effect of coping on distress. Thirdly, we wanted to investigate differences in coping and distress related to choice of surgery or conventional treatment.nnnDESIGNnCross-sectional data from patients in the Swedish Obese Subjects (SOS) intervention study.nnnMETHODSnAn obesity-related questionnaire concerning coping and distress was created and evaluated in 2510 patients from the SOS study, using multitrait, exploratory and confirmatory factor analysis procedures.nnnRESULTSnThree coping factors were defined. Social Trust and Fighting Spirit were problem-focused, whereas Wishful Thinking was emotion-focused. Surgical candidates displayed lower levels of problem-focused and higher levels of emotion-focused coping. We also identified two distress factors: Intrusion and Helplessness. Wishful Thinking was positively related to distress, and Social Trust and Fighting Spirit were inversely related, thus explaining the higher levels of distress reported by the surgical candidates.nnnCONCLUSIONSnIn our sample, emotion-focused coping proved maladaptive and was associated with increased distress. Problem-focused coping, however, was adaptive and associated with reduced distress. These findings partly explain psychological morbidity and should be taken into consideration in the treatment of obese people.

Quality of life in patients with chronic alveolar hypoventilation

Measurements of health-related quality of life (HRQL) have not been reported in patients with chronic alveolar hypoventilation (CAH) before starting home mechanical ventilation. The purpose of this study was to investigate quality of life in a population of such patients. Forty-four consecutive patients with CAH due to previous polio, scoliosis, healed pulmonary tuberculosis or neuromuscular disease answered a battery of condition specific and generic (Sickness Impact Profile, Hospital Anxiety and Depression scale, Mood Adjective Check List) self-report questionnaires. Spirometry, arterial blood gases and overnight oxygen saturation were measured. Patients with untreated CAH had significantly impaired HRQL compared to historical data from a healthy reference population. Sleep-related problems were frequent. Age, underlying disease, and standard bicarbonate correlated significantly with HRQL measures, albeit with modest levels of explained variance (8–37%). Patients with chronic alveolar hypoventilation due to neuromuscular or restrictive chest wall disorders had severely impaired health-related quality of life. Age, the underlying disease and severity of hypoventilation are each related to the health-related quality of life decrements. Health-related quality of life measurements add important information to traditional clinical observations.

General and condition-specific measures of coping strategies in persons with spinal cord lesion

We examined psychometric properties and validity of a general (Ways of Coping Questionnaire; WCQ) and a condition-specific (Spinal Cord Lesion-related Coping Strategies Questionnaire; SCL CSQ) measure of coping strategies. The sample included 181 community-residing traumatically spinal cord lesioned persons aged 16u200a–u200a85 years. Multi-trait/multi-item analysis, confirmatory factor analysis and multiple regression were used. Reliability and validity estimates were acceptable in most instances for the SCL CSQ, whereas the validity of the WCQ was inadequate. The SCL CSQ showed a significant relationship with the overall quality of life outcome measure, whereas the WCQ did not. We recommend condition-specific measures of coping strategies, and that the combination with coping style measures be tested in medical populations.

Impact of home mechanical ventilation on health-related quality of life in patients with chronic alveolar hypoventilation: a prospective study.

Background:u2002 Nocturnal ventilatory support by nasal positive pressure ventilation (NPPV) is an established treatment method in patients with chronic alveolar hypoventilation (CAH). The knowledge about its long‐term effects on health‐related quality of life (HRQL) is limited.