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Biomedical subjects

C Jenkinson

Publications and source records attributed to C Jenkinson.

At least 19 recordsLinked to original sources

Testing the validity of the PDQ-39 in patients with MSA.

We assessed the validity of the PDQ-39, a disease-specific health-related quality of life instrument for patients with Parkinson's disease, in patients with multiple system atrophy (MSA). Two hundred and seventy-nine patients completed the PDQ-39, the EQ-5D, the Hospital Anxiety and Depression Scale, and scales of life satisfaction and disease severity. Ceiling and floor effects were noted in some dimensions, and Mobility was skewed towards the severe end of the spectrum. Apart from the dimension of Social Support, all dimensions had high internal consistency. The factor structure of the PDQ-39 in MSA was stable, and convergent and divergent validity with other measures of quality of life and mental health were good. However, many of the specific features of MSA are not reflected in the PDQ-39. Higher order factor analysis did not support the use of a single summary index. We conclude that the PDQ-39 has only limited validity in patients with MSA.

Activities of Daily Living↗

The relationship between body mass index and health-related quality of life: comparing the EQ-5D, EuroQol VAS and SF-6D.

BACKGROUND: No other studies have compared the relationship between body mass index (BMI) and health-related quality of life (HRQL) on more than one utility measure. Estimating the HRQL effects of obesity on a (common) utility scale enables the relative cost-effectiveness of interventions designed to alleviate obesity to be estimated. OBJECTIVE: To examine the relationship between BMI and HRQL according to the EQ-5D, EuroQol visual analogue scale (EQ-VAS) and SF-6D. METHODS: Patients aged >/=45 years at one UK general practice were asked to complete the EQ-5D, EQ-VAS, SF-36 questionnaire (used to derive the SF-6D), and information on their characteristics and co-morbidity. Body mass index was categorized according to the World Health Organization (WHO) recommendations. Regression analysis was used to compare the HRQL of normal BMI patients to the HRQL of patients in other BMI categories, while controlling for patient characteristics and co-morbidity. RESULTS: A total of 1865 patients responded (67%), mean BMI 26.0 kg/m(2), 16% obese (BMI>/=30). Patients with back pain, hip pain, knee pain, asthma, diabetes or osteoarthritis were also significantly more likely to be obese. After controlling for other factors, compared to normal BMI patients, obese patients had a lower HRQL according to the EQ-5D (P<0.01), EQ-VAS (P<0.001) and SF-6D (P<0.001). Pre-obese patients were not estimated to have a significantly lower HRQL, and underweight patients were only estimated to have a significantly lower HRQL according to the SF-6D. These results arose because, on the EQ-5D, obese patients were found to have significantly more problems with mobility and pain, compared to physical functioning, social functioning and role limitations on the SF-6D. Whereas, according to the SF-6D, underweight patients had significantly more problems on the dimension of role limitation. CONCLUSION: The EQ-5D, EQ-VAS and SF-6D were in agreement that, relative to a normal BMI, obesity is associated with a lower HRQL, even after controlling for patient characteristics and co-morbidity. These three measures are thereby sensitive to the HRQL effects of obesity and can be used to estimate the cost-effectiveness of interventions designed to alleviate obesity.

Age Distribution↗

The impact of HIV on maternal quality of life in Uganda.

To study the effect of HIV infection on quality of life (QOL) during pregnancy and puerperium, QOL was measured in a cohort study at St. Francis Hospital Nsambya, Kampala, Uganda. Dartmouth COOP charts were administered to 132 HIV-positive and 399 HIV-negative women at 36 weeks of pregnancy and six weeks post-partum. Responses were coded from 0 = best health-status to 4 = worst health-status and scores of 3-4 defined as poor. Odds ratios (OR) (95% confidence intervals(CI)) for poor scores were calculated and independent predictors of poor QOL examined using logistic regression. In pregnancy, HIV-positive women were more likely to have poor scores in feelings: OR = 3.2(1.9-5.3), daily activities: OR = 2.8(1.4-5.5), pain: OR = 2.1(1.3-3.5), overall health: OR = 1.7(1.1-2.7) and QOL: OR = 7.2(3.6-14.7), all p= 0.2). HIV infection was independently associated with poor QOL: OR = 8.5(3.8-19). Findings in puerperium were similar to those in pregnancy except more HIV-positive women had poor scores in social activities: OR = 2.5(1.4-4.7) and change in health: OR = 5.4(2-14.5) and infant death also predicted poor QOL: OR = 6.7(2.4-18.5). The findings reflect HIV's adverse impact on maternal QOL and the need for interventions to alleviate this infection's social and emotional effects.

Adult↗

A children's acute respiratory illness scale (CARIFS) predicted functional severity and family burden.

OBJECTIVE: The Canadian Acute Respiratory Illness and Flu Scale (CARIFS) was developed to measure illness severity in children with acute respiratory infection. The objective of this study was to evaluate its performance in a European primary care setting. STUDY DESIGN AND SETTING: 178 children (median age 3 years) with cough and fever were recruited in UK general practice. Perceived severity of illness at recruitment was recorded by parents, doctors, and nurses. Parents also completed an illness diary, including the CARIF scale, until their child had recovered. In-depth interviews were conducted with 24 parents. RESULTS: Parents found CARIFS relatively easy and quick to complete (78% of parents returned a fully completed diary covering the duration of the illness), internal consistency was high (minimum item correlation with total score 0.22; overall Cronbach's alpha statistic 0.85), and responsiveness to improvement in health was good (observed effect size of 0.45 at 8 h). At presentation, however, neither the overall CARIFS score nor the clinical element of the score correlated with physician assessment of clinical severity. CONCLUSION: Of the three recognized domains of illness severity, CARIFS appears to be a good and valid measure of functional severity and burden of illness to the parent but it may not be a good measure of physiological severity.

Acute Disease↗

Breast cancer incidence and its possible spatial association with pesticide application in two counties of England.

BACKGROUND: This study examines the spatial distribution of breast cancer incidence in Lincolnshire and Leicestershire, and its association with the application of selected pesticides. METHODS: The Black-White (BW) join-count statistic and Moran I coefficient were used to investigate the localized distribution of breast cancer. Linear regression techniques were applied to examine the association between the breast cancer incidence rate and pesticide application. RESULTS: The results from the BW join-count test and the Moran I coefficient test showed no overall evidence of localized distribution, 'clusters', of breast cancer. The regression analyses showed no sign of spatial association between breast cancer and application of pesticides in the urban areas as expected. The findings, however, did reveal a spatial association between the breast cancer incidence rates and the application of three selected pesticides [Aldicarb, Atrazine and Lindane (thought to potentially mimic oestrogen)] in rural Leicestershire. No such association was seen in Lincolnshire. CONCLUSIONS: Pesticides vary significantly in their spatial application. Overall, consistent associations between breast cancer incidence rates and the selected pesticides were not found, although the ecological study design has limitations and these are discussed. This approach is able to rule out strong associations; assessment of smaller risk would require a large and expensive study in individuals. The results of this study, although derived in the UK, have significance to the debate concerning the possibility of environmental compounds that mimic oestrogen and their consequences for human health.

Aged↗

A comparison of Rasch with Likert scoring to discriminate between patients' evaluations of total hip replacement surgery.

The purpose of this study was to examine whether there are advantages in terms of outcome assessment of using Rasch methods of scoring the 12-item Oxford Hip Score (OHS) questionnaire over conventionally Likert scores. As part of a prospective cohort study of total hip replacements in five former regions of England the OHS was sent to patients pre-operatively, at 3 months and 1 year post-operatively. Post-operative data was collected on over 5000 cases. Based on the level of satisfaction with surgery, patients were divided into satisfied and dissatisfied. Analyses were performed to test the relative precision (RP) of Rasch scoring vs. conventionally Likert scores in discriminating the groups experiencing different level of satisfaction. Considerable gains in precision were achieved with Rasch scoring methods when groups were compared 3 and 12 months post-operatively. The results from the current study suggest that in some situations there may be substantial gains in measuring health related outcomes using Rasch-based scoring methods.

Activities of Daily Living↗

Endocrine effects of nasal continuous positive airway pressure in male patients with obstructive sleep apnoea.

OBJECTIVE: Obstructive sleep apnoea (OSA) is a relatively common condition producing disabling somnolence and profound physiological responses to hypoxaemic episodes during sleep, including significant oscillations in blood pressure. This study aimed to provide controlled data on the interaction between OSA and endocrine axes to establish whether overrepresentation of pathology such as hypertension and hypogonadism in OSA subjects might have an endocrine basis. DESIGN, SETTING AND SUBJECTS: Parallel randomized sham placebo controlled 1-month trial of nasal continuous positive airway pressure (nCPAP) in 101 male subjects with OSA presenting to a respiratory sleep clinic. METHODS: Analysis of gonadotrophins, testosterone, sex hormone binding protein (SHBG), prolactin, cortisol, thyroid stimulating hormone (TSH), free thyroxine (free T4), insulin-like growth factor-1 (IGF-1), renin and aldosterone were performed at baseline and after 1 month's active or placebo nCPAP intervention. Quality of life questionnaire scoring was also recorded over the same time period. RESULTS: Testosterone and SHBG showed significant negative correlations with baseline OSA severity. Active treatment of OSA produced SHBG elevation and TSH reduction (P< or =0.03). Both groups showed an increase in aldosterone (P<0.001) and IGF-1 (P< or =0.03), associated with a large improvement in subjective quality of life scoring. CONCLUSIONS: These findings demonstrate significant changes in endocrine axes not previously reported in a placebo-controlled trial. OSA is a recognized reversible cause of testosterone reduction; SHBG suppression correlating to baseline OSA severity supports a diagnosis of secondary hypogonadism. Significant rises in aldosterone and IGF-1 on treatment coincide with increased physical activity and an improved quality of life score.

Aldosterone↗

Deriving summary indices of health status from the Amyotrophic Lateral Sclerosis Assessment Questionnaires (ALSAQ-40 and ALSAQ-5).

OBJECTIVES: To use statistical procedures, operationalising what is known as item response theory (IRT), to assess the unidimensionality of the 40 item Amyotrophic Lateral Sclerosis Assessment Questionnaire, and consequently to develop a single index figure from the measure. A secondary objective is to compare scores gained on the ALSAQ-40 with a five item short form (the ALSAQ-5). METHODS: Postal survey of patients diagnosed with motor neurone disease (MND) on the MND Associations database. Copies of the ALSAQ-40 and, nested within it, the ALSAQ-5 were completed on two occasions. At time one, the survey contained the ALSAQ-40 and demographic questions. In addition, patients were asked to indicate if they were willing to take part in the follow up. Those who agreed to do so were sent another copy of the questionnaire after a period of three months. Respondents were also asked to indicate how much change they had experienced since baseline on each of the five domains of the questionnaire. Rasch analysis, a form of IRT methodology, was used to determine if the 40 items in the ALSAQ-40 tapped an underlying "latent trait", and were consequently measuring a unidimensional construct. The results from the ALSAQ-40 single index were then compared with those gained from the ALSAQ-5. RESULTS: Analyses indicated that, at both baseline and follow up, all items on the ALSAQ-40 fitted the Rasch model. Consequently the 40 items were summed to create a single index. Results on this instrument were compared with those gained by summing the five items of the ALSAQ-5. Results on the instruments were found to be highly correlated. CONCLUSIONS: Evidence from the analyses suggests that 40 item ALSAQ does contain a unidimensional scale, and can, therefore be summed to create a single index. Furthermore the ALSAQ-5 closely replicates the results of the patient measure.

Activities of Daily Living↗

Using the SF-36 measure to compare the health impact of multiple sclerosis and Parkinson's disease with normal population health profiles.

OBJECTIVE: To examine the relative impact of two chronic neurological disorders, multiple sclerosis and Parkinson's disease, by comparing patients' scores on the medical outcomes study 36-item short form health survey (SF-36) with the health profile of the United Kingdom population norms. METHODS: 638 people representing the full spectrum of multiple sclerosis and 227 patients with Parkinson's disease were studied. Health status was measured by the SF-36. Scores for the eight health domains were compared after controlling for age, sex, disease duration, mobility, social class, ethnicity, education, marital status, and employment status. RESULTS: People with multiple sclerosis and those with Parkinson's disease had significantly worse health than the general population on all eight domains measured by the SF-36. The relative impact of multiple sclerosis and Parkinson's disease were similar, but multiple sclerosis resulted in poorer scores on physical functioning and better scores in mental health. People with mild multiple sclerosis who walked without an aid also had significantly worse scores in all dimensions than the general UK population. CONCLUSIONS: The results highlight the need for further research into aspects of health measured by the SF-36. Nevertheless, generic measures that are applicable across multiple diseases may fail to address clinically important aspects of the impact of specific disorders.

Adult↗

Interpreting change scores on the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40).

OBJECTIVES: To determine the amount of change over time on the five dimensions of the 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40) that are subjectively meaningful to patients. Minimally important differences (MID), effect sizes (ES) and standardized response means (SRM) are calculated for respondents who indicate only a little change over the time of the study whilst mean change scores, ES and SRM statistics are calculated for those who indicated much change. DESIGN: Postal survey. Copies of the ALSAQ-40 were completed on two occasions three months apart. Respondents were also asked to indicate how much change they had experienced since baseline on each of the five domains of the questionnaire. SETTING: All patient members of the Motor Neurone Disease Association for England, Wales and Northern Ireland. SUBJECTS: Seven hundred and sixty-four patient members returned questionnaires at baseline and follow-up. RESULTS: For those reporting minor change since baseline results varied across dimensions. For example a MID was reflected in a change of 6.67 (SD 16.52) points for the Communication dimension, whilst for the Emotional functioning dimension the change was 2.67 (SD 15.45) points. Similarly ESs and SRMs varied considerably across dimensions. Mean change over time, ES and SRM statistics for those who reported that their health was much worse at follow-up were substantially larger: for example, mean changes ranged from 6.87 (SD 15.87) to 13.79 (SD 22.60). CONCLUSIONS: Results indicate the minimum magnitude of change that is subjectively meaningful to patients. Results indicate that smaller changes than have been suggested previously as significant have a subjectively meaningful adverse effect upon patients.

Adult↗

The level of haemoglobin in anaemic cancer patients correlates positively with quality of life.

The aim of this study was to assess the relationship between haemoglobin level and quality-of-life in anaemic cancer patients. Patients, diagnosed with one of four cancers, were recruited if their haemoglobin level was <12 g dl(-1) (female) or <13 g dl(-1) (male). The condition-specific Functional Assessment of Cancer Therapy-Anaemia and the generic SF-36 were used to assess quality-of-life. Thirty-six per cent of the 179 recruited patients had breast cancer, 28% ovarian cancer, 25% lung cancer, and 11% multiple myeloma. Their mean (s.d.) haemoglobin level was 10.66 (1.04) g dl(-1). Partial correlations controlling for the potentially confounding effects of age, gender, and time since diagnosis found significant positive relationships between haemoglobin and all domains of the Functional Assessment of Cancer Therapy-Anaemia, and with all but two of the SF-36 domains. On linear regression controlling for the same factors, each unit haemoglobin rise equalled an average 8.19 Functional Assessment of Cancer Therapy-Anaemia, and an average 6.88 Functional Assessment of Cancer Therapy-Fatigue, increase. Haemoglobin accounted for a similar amount of variability (8%) in SF-36 scores. In conclusion, quality-of-life has been found to be significantly positively related to haemoglobin level in anaemic cancer patients. This suggests that normalisation of haemoglobin in cancer patients is likely to increase their quality-of-life. The greater sensitivity of the condition-specific Functional Assessment of Cancer Therapy-Anaemia compared with the generic SF-36 suggests that the Functional Assessment of Cancer Therapy-Anaemia can be used alone to assess quality-of life in this patient group.

Adult↗

Assessment of health-related quality-of-life in males with Anderson Fabry Disease before therapeutic intervention.

Anderson Fabry Disease (AFD) is an extremely painful and debilitating multi-system X-linked disorder due to alpha-galactosidase enzyme deficiency. To date, no baseline data on health-related quality-of-life (HR-QoL) have been reported in males affected with this condition. In this study, 38 males with AFD completed Medical Outcomes Study Short Form, EuroQoL questionnaires and an AFD-specific questionnaire prior to the start of a trial involving replacement therapy with alpha-galactosidase. Results from these questionnaires were compared to the results from a similar HR-QoL study in males with severe haemophilia (factor VIII/IX deficiency) that used the same questionnaires and to the results of two large normative studies. The results on both questionnaires showed that in most instances males with AFD recorded significantly lower HR-QoL compared with males in the general population and individuals with severe haemophilia after adjusting for differences in age. These findings suggest therefore, that the scope for improvement in HR-QoL as a result of treatment with an appropriate agent is extremely large.

Adult↗

Development and validation of a short measure of health status for individuals with acute myocardial infarction: the myocardial infarction dimensional assessment scale (MIDAS).

The purpose of this study was to develop and validate a disease-specific health status measure for individuals with myocardial infarction (MI). The development of the myocardial infarction dimensional assessment scale (MIDAS) followed three main stages. Stage 1 consisted of in-depth, semi-structured, exploratory interviews conducted on a sample of 31 patients to identify areas of salience and concern to patients with MI. These interviews generated 48 candidate questions. In stage 2 the 48-item questionnaire was used in a postal survey to identify appropriate rephrasing/shortening, to determine acceptability and to help identify sub-scales of the instrument addressing different dimensions of MI. Finally, in stage 3 the construct validity of MIDAS subscales was examined in relation to clinical and other health outcomes. A single centre (district general hospital) in England was used for stages 1 and 3 and a national postal survey was conducted for stage 2. A total of 410 patients were recruited for the national survey (stage 2). Full data were available on 348 (85%) patients. One hundred and fifty-five patients were recruited to test construct validity (stage 3). The MIDAS contains 35 questions measuring seven areas of health status: physical activity, insecurity, emotional reaction, dependency, diet, concerns over medication and side effects. The measure has high face, internal and construct validity and is likely to prove useful in the evaluation of treatment regimes for MI.

Activities of Daily Living↗

The coronary heart disease in-patient experience questionnaire (I-PEQ (CHD)): results from the survey of National Health Service patients.

OBJECTIVE: Analysis of data from the National Survey of Coronary Heart Disease patients to develop a core measure of patient experiences of health care. A secondary purpose was to determine whether a single summary index figure could be generated from the instrument. DESIGN: The data reported here comes from the survey of coronary heart disease (CHD) patients, which was the second in the programme of National Surveys of National Health Service (NHS) patients. It took place during 1999. After an in-patient episode for CHD, questionnaires were mailed out to patients with a covering letter and a pre-paid stamped addressed envelope. Those patients who did not reply within two weeks of the initial mailing were sent a reminder letter and, if this elicited no reply within two weeks, they were sent another copy of the questionnaire. SAMPLE: Of the 116,872 patients who were sent questionnaires, 3399 proved to be ineligible or out-of scope to the survey. Responses were gained from 84,310 (74.3% of eligible respondents). RESULTS: Reliability analysis supported the existence of seven dimensions which seem to be tapping distinct underlying phenomena: hospital environment, information and communication, patient involvement, coordination of care, discharge and transition, and pain. Higher order factor analysis indicated these dimensions constituted one factor and, consequently, can be summed to create an index figure. The construct validity of the measure was assessed, and it distinguished between groups as was hypothesised. CONCLUSIONS: The dimensions of the questionnaire have high internal reliability. Both the dimensions of the instrument and the index score were found to have high construct validity. The instrument provides a core set of issues that should be covered when assessing the quality of care for hospital patients with coronary heart disease.

Adult↗

Patients' experiences and satisfaction with health care: results of a questionnaire study of specific aspects of care.

OBJECTIVE: To determine what aspects of healthcare provision are most likely to influence satisfaction with care and willingness to recommend hospital services to others and, secondly, to explore the extent to which satisfaction is a meaningful indicator of patient experience of healthcare services. DESIGN: Postal survey of a sample of patients who underwent a period of inpatient care. Patients were asked to evaluate their overall experience of this episode of care and to complete the Picker Inpatient Survey questionnaire on specific aspects of their care. SAMPLE: Patients aged 18 and over presenting at five hospitals within one NHS trust in Scotland. METHOD: 3592 questionnaires were mailed to patients' homes within 1 month of discharge from hospital during a 12 month period. Two reminders were sent to non-responders; 2249 (65%) questionnaires were returned. RESULTS: Almost 90% of respondents indicated that they were satisfied with their period of inpatient care. Age and overall self-assessed health were only weakly associated with satisfaction. A multiple linear regression indicated that the major determinants of patient satisfaction were physical comfort, emotional support, and respect for patient preferences. However, many patients who reported their satisfaction with the care they received also indicated problems with their inpatient care as measured on the Picker Inpatient Survey; 55% of respondents who rated their inpatient episode as "excellent" indicated problems on 10% of the issues measured on the Picker questionnaire. DISCUSSION: The evidence suggests that patient satisfaction scores present a limited and optimistic picture. Detailed questions about specific aspects of patients' experiences are likely to be more useful for monitoring the performance of various hospital departments and wards and could point to ways in which delivery of health care could be improved.

Adolescent↗

[Validation of the French language version of the Parkinson's Disease Questionnaire - PDQ-39].

After Alzheimer's disease, Parkinson's disease (PD) is the second most frequent degenerative disease of the central nervous system. The consequences of PD at the functional, social and emotional levels warrant a better understanding the patient's perceptions as measured using a specific instrument rather than restricting the medical approach to the clinical evaluation of the motor component. In 1996, we began implementation of a project to transculturally validate the single specific instrument that had been published and was available at that time: PDQ-39. The scale consists in a 39-item questionnaire enabling determination of an overall quality-of-life score and scores for 8 specific dimensions: mobility, activities of daily living, emotional well-being, stigma, social support, cognitions, communication and bodily discomfort. Eighty-nine patients taking part in an open-label study of the safety of a combination of pergolide and dopa therapy were included and followed up on D15 and after 8 weeks. The process of "Forward-Backward" translation, conducted in close liaison with the authors, enabled semantic and linguistic validation of the French language version. The content was validated by PD experts. At baseline, the patients presented quality-of-life scores that were particularly impaired for the dimensions exploring Mobility, Emotional well-being and Bodily discomfort. The main metric properties of the scale were confirmed. The PDQ-39 scores were closely correlated with the related concepts investigated by generic scale, SF-36. The PDQ-39 scores were correlated with the "Mental and Mood Status", "Everyday Activities" and "Motor Status" dimensions determined by the UPDRS. The reliability, expressed by Cronbach coefficients alpha, showed strong consistency of the instrument, very similar to the data for the original version. In contrast to what was observed with SF-36, the scale was particularly sensitive to clinical changes. The initial results make PDQ-39 a precious tool for the optimization of management of patients presenting with PD.

Female↗

Development of an endometriosis quality-of-life instrument: The Endometriosis Health Profile-30.

OBJECTIVE: To describe a new disease-specific questionnaire with established measurement properties that addresses the dimensions of health-related quality of life considered important to women with endometriosis. METHODS: The Endometriosis Health Profile-30 was developed in three stages. Stage 1 included open-ended exploratory interviews with 25 women to generate the items on the questionnaire. Stage 2 was an 87-item questionnaire administered in a postal survey to identify the most salient dimensions of health-related quality of life. In stage 3, the reliability and validity of the questionnaire were evaluated. RESULTS: The final instrument contained a core questionnaire with 30 items and five scales: pain, control and powerlessness, emotional well-being, social support, and self-image. Six modular parts consisting of 23 questions were also developed and measured the areas of sexual intercourse, work, relationship with children, feelings about the medical profession, treatment, and infertility. All the scales achieved high internal reliability, with Cronbach's alpha coefficient ranging from 0.83 to 0.93 (core questionnaire) and 0.79 to 0.96 (modules). The intraclass correlation coefficients to evaluate the test-retest reliability were high (range 0.88-0.98, P <.001). Content validity was demonstrated as the questionnaire was developed from interviews of patients rather than existing literature and clinical scales. Construct validity was assessed by correlating the Endometriosis Health Profile-30 scales with the relevant Short Form-36 scales. High correlations for all comparisons were found (-0.41 to -0.73). CONCLUSION: The Endometriosis Health Profile-30 is a reliable, valid, patient-generated instrument to measure the health-related quality of life of women with endometriosis. Its application in various health care settings will provide new and valuable information on the effect of endometriosis on health-related quality of life from the patients' perspective.

Adolescent↗

Measuring mental health in amyotrophic lateral sclerosis (ALS): a comparison of the SF-36 Mental Health Index with the Psychological General Well-Being Index.

OBJECT: The purpose of this study was to compare the performance of the five-item mental health dimension of SF-36 (the Mental Health Index, MHI-5) with that of the 22-item Psychological General Well-Being Index (PGWB) in patients presenting with amyotrophic lateral sclerosis/motor neuron disease, using tests of reliability and validity. DESIGN: A questionnaire-based survey of patients diagnosed with ALS across 15 European countries. SAMPLE: Patients presenting at neurological clinics for treatment of their ALS were asked to join the survey. RESULTS: 1048 patients with ALS have been recruited, of whom 861 (82.2%) have returned baseline questionnaires. There was evidence supporting the internal consistency of both instruments, and for their construct validity in distinguishing between groups, in terms of gender and age. The scores on the two instruments were highly correlated (Spearman rank correlation 0.85). CONCLUSION: Both the MHI-5 and the PGWB showed high levels of construct validity and internal reliability in this patient group. The MHI-5 has comparable psychometric performance to the PGWB, and can be used to measure and compare mental health in defined populations.

Adult↗