Development and testing of the Parkinson's disease quality of life scale.

We report on the development and results of preliminary psychometric testing of a disease specific health-related quality of life (HRQoL) scale intended for use in individuals diagnosed with idiopathic Parkinson's disease (PD). Results from an initial qualitative study provided content for item development and scale construction of the Parkinson's disease quality of life scale (PDQUALIF). The 33-item instrument includes seven domains: social/role function, self-image/sexuality, sleep, outlook, physical function, independence, and urinary function, plus one item of Global HRQoL. Initial psychometric testing of the instrument was conducted in 233 outpatient clinic attendees with physician-confirmed idiopathic PD. Factor structure, reliability and validity of the scale have been established in this cross-sectional study. Continuing development of the PDQUALIF will be directed at enhancing the psychometric properties, establishing responsiveness and determining appropriateness in culturally diverse samples.     

Conceptualization of a new stroke-specific outcome measure: the stroke impact scale

Current stroke outcome measures are unable to detect some consequences of stroke that affect patients, families, and providers. The objective of this study was to ensure the content validity of a new stroke outcome measure. This was a qualitative study using individual interviews with patients and focus group interviews with patients, caregivers, and health care professionals. Participants included 30 individuals with mild and moderate stroke, 23 caregivers, and 9 stroke experts. Qualitative analysis of the individual and focus group interviews generated a list of potential items. Consensus panels reviewed the potential items, established domains for the measure, developed item scales, and decided on mechanisms for administration and scoring. Although the participants with stroke appeared highly recovered based on scores from conventional stroke assessments (Barthel Index and NIH Stroke Scale), stroke survivors and their caregivers identified numerous persisting impairments, disabilities, and handicaps. In general, stroke survivors described themselves as only about 50% recovered and reported that they had difficulty in activities in which they were not independent. To fully assess the impact of stroke on patients, we used the results of this qualitative study to develop a new stroke-specific outcome, the Stroke Impact Scale.     

Development of the QoL.BD: a disorder-specific scale to assess quality of life in bipolar disorder

Michalak EE, Murray G, CREST.BD. Development of the QoL.BD: a disorder‐specific scale to assess quality of life in bipolar disorder.
Bipolar Disord 2010: 12: 727–740. © 2010 The Authors.
Journal compilation © 2010 John Wiley & Sons A/S. Background: There is wide recognition that symptom ratings alone are inadequate to measure outcomes in bipolar disorder (BD), and quality of life (QoL) has been proposed as an important separable construct. Although a literature on QoL in BD exists, there is no disorder‐specific measure of QoL in BD. In 2004, we embarked upon a four‐year mixed‐method program of research to develop such a measure that could function as an outcome tool in clinical trials of pharmacological or psychosocial treatment interventions, longitudinal monitoring, or routine clinical care. Methods: The project was informed by standard protocols for the development of disorder‐specific QoL measures. Two phases of scale development were pursued across four empirical studies. Item generation involved a qualitative investigation of individuals with BD, family members, and field experts (Study 1), as well as a literature review. Item reduction analyses were conducted using an intensive small‐N design with affected individuals (Study 2), a large field sample (Study 3), and a final small‐N item reduction study, again involving individuals with the disorder and field experts (Study 4). Results: Initial field testing of the Quality of Life in Bipolar Disorder (QoL.BD) scale supports use of the instrument as a feasible, reliable and valid disorder‐specific QoL measure for BD. Internal reliability of the QoL.BD is impressive, test‐retest reliability is appropriate, and the direction and magnitude of correlations with external measures are as expected. As a new instrument, the QoL.BD must be compared against existing options for measuring QoL in this population. Significantly, data suggest that the greater specificity of the QoL.BD relative to the Quality of Life Enjoyment and Satisfaction Questionnaire renders the new instrument more sensitive to clinical change in BD. Conclusions: Quality of life scales can provide important information additional to that provided by traditional assessments of outcome in BD. Our intensive, mixed‐method development of the QoL.BD has produced a useful additional measure of well‐being for this complex and often disabling condition.     

Initial development and validation of a mitochondrial disease quality of life scale

Mitochondrial diseases are a clinically diverse group of genetic disorders that often present to neurologists. Health related quality of life (HRQOL) is increasingly recognised as a fundamental patient based outcome measure in both clinical intervention and research. Generic outcome measures have been extensively validated to assess HRQOL across populations and different disease states. However, due to their inclusive construct, it is acknowledged that not all relevant aspects of a specific illness may be captured. Hence there is a need to develop disease specific HRQOL measures that centre on symptoms characteristic of a specific disease or condition and their impact. This study presents the initial conceptualisation, development and preliminary psychometric assessment (validity and reliability) of a mitochondrial disease specific HRQOL measure (Newcastle Mitochondrial Quality of life measure (NMQ)). NMQ is a valuable assessment tool and consists of 63 items within 16 unidimensional domains, each demonstrating good internal reliability (Cronbach’s α ? 0.83) and construct validity.     

Assessment of the stroke-specific quality-of-life scale in KFHU,Khobar: A prospective cross-sectional study

Objectives:To assess the overall and domain-specific quality of life (QOL) in post-stroke patients using the stroke-specific quality of life (SS-QOL) scale and to identify variables that may affect the QOL after stroke.Methods:A prospective cross-sectional study, included 80 stroke patients, was conducted in the Neurology department at King Fahad Hospital of the University (KFHU), Khobar, Saudi Arabia, from December 2019 to February 2020. Stroke patients were interviewed using the Arabic version of the SS-QOL questionnaire and modified Rankin scale (mRS).Results:The overall quality of life in the surveyed participants was at the level of 3.72 points, which is above the average recognized in the middle of the scale that ranges from 1 to 5. The overall quality of life was not significantly correlated with sex, age, type of stroke, recurrence of stroke, and time since stroke (p>0.05). Hypertension and atrial fibrillation were the only comorbidities that were determined to be significantly associated with the overall quality of life at the level of (3.53), and (2.97) respectively (p<0.05). There was a statistically significant correlation between the mRS score and the overall quality of life (p<0.05).Conclusion:Performing a comprehensive assessment of the overall QOL in post-stroke patients will result in better health outcomes, particularly in terms of quality of functioning in psycho-social aspects.

Stroke is a disease that is known by its focal neurologic deficit.¹ It occurs when there is a disruption of the blood flow to the brain either by a clot, causing ischemic stroke or by a rupture of the blood vessels, causing hemorrhagic stroke.² It is experienced by approximately 15 million people worldwide and it is considered to be the second cause of mortality. Among these people, 5 million die and another 5 million live with lifelong disability, which creates a major economic and social burden. The number of cases of stroke in Saudi Arabia is increasing and becoming a debilitating reason for death and disability. Research on the incidence and prevalence of stroke in Saudi Arabia is still lacking. There is only one study conducted in Saudi Arabia in the last 10 years, which states that stroke’s prevalence is 29 per 100,000 each year.^2,3Stroke affects the quality of life (QOL) of patients owing to its related cognitive, physical and functional consequences, such as restrictions in mobility, language impairment and depression.^4,5 Although stroke causes extensive functional impairment, the objective methods of evaluation usually fail to assess the subjective impact of these impairments.⁶ The Health-related QOL (HR-QOL) is a term used to evaluate a person’s wellbeing including physical, psychological, functional, and social aspects.⁷ There are various instruments to assess HR-QOL, most of which are based on subjective self-administered questionnaires. Among these instruments is the stroke-specific QOL (SS-QOL) scale, which was established as a multi-dimensional tool for various effects in post-stroke patients.⁸Up to date, there have been 4 studies conducted in Saudi Arabia on the assessment of QOL in post-stroke patients.^9-12 Two of them were conducted in Jeddah; in these studies, the researchers studied QOL among stroke patients using the HR-QOL scale.^9,10 The other 2 studies were conducted in Al Khobar; the first study studied the psychometric properties of an Arabic version of the fatigue severity scale (FSS),¹¹ while the second study measured QOL using SS-QOL and compared its variables such as socio-demographic factors, type of stroke, time passed since the stroke, affected body side, and the living status of stroke patients.¹² However, QOL in post-stroke patients evaluated using SS-QOL has not been studied yet in terms of other variables such as recurrence of stroke, degree of physical disability, comorbidities, and risk factors. Therefore, the aim of this study is to assess the overall and domain-specific QOL in post-stroke patients using the SS-QOL scale and to identify variables that may affect the quality of life after stroke. The quality of life in post-stroke patients has a statistically significant relationship with the type of stroke, duration since the last event, patient demographics, comorbidities, and degree of physical disability.     

Psychometric qualities of the French version of the Heinrichs quality of life rating scale.

The quality of life concept has been increasingly used as a major tool for patient care and clinical investigations. The Heinrichs quality of life scale (QLS) is the quality of life assessment method widely used in schizophrenic patients. The QLS was translated into its French version by J.D.Guelfi according the back-translation method. This version of the validation study included 60 schizophrenic inpatients. The scale possesses acceptable psychometric qualities. The test-retest reliability is good for nearly all items of the scale and for the categories and overall score. The internal consistency alpha-coefficients were 0.9 for the global score and varied between 0.6 and 0.9 according to the category. Factor analysis elicited four factors. Convergent validity is good. Recommendations for future use of the QLS are proposed.     

Evaluation of the psychometric properties of the Hungarian quality of life in depression scale.

The paper describes the adaptation and psychometric evaluation of the Hungarian version of the quality of life in depression scale. The adaptation procedure involved: bilingual translation; field-testing for face and content validity; and assessment of instrument's reliability and construct validity. The new language version was shown to be well-accepted by respondents and to have excellent psychometric properties.     

A scale for assessing quality of life in adult asthma sufferers

The Asthma Questionnaire is a 68-item quality of life scale designed to be sensitive to quality of life changes in clinical trials. The questionnaire covers 11 domains of life experience, the initial domain and item sets being derived from six qualitative focus groups of asthma patients. Psychometric analysis of responses of 101 asthma patients to the initial 101-item set showed the scale to be unidimensional despite being multi-domain, and the finding of unidimensionality was replicated during the further three stages of item refinement using 783 patients. The scale compensates for acquiescence bias as well as allowing a 'not applicable' response category. Validity of the scale was demonstrated by confirmation of expected group differences and the retest reliability was 0.948.     

Validating a quality of life rating scale for idiopathic parkinsonism: Parkinson's Impact Scale (PIMS)

The signs and symptoms of idiopathic parkinsonism (IP, Parkinson's disease) are most commonly documented using one or more rating scales that assess physical limitations due to illness and drug side-effects with some attention being paid to depression. Scant attention has been paid to the impact of these limitations on a patient's life. Nurses in the Parkinson Foundation of Canada Clinical Assistance/ Outreach Programmes have designed a Quality of Life Rating Scale (Parkinson's Impact Scale, PIMS) to measure the impact of IP on 10 aspects of a patient's emotional, social and economic life. The scale had to fit onto one side of an 8 x 11 in. piece of paper, take a patient less than 10 min to complete, take fluctuations in symptoms ('on/off' attacks) into account, have unambiguous guidelines for the definition of each item, and a simple scoring system. A study was carried out to assess the reliability and validity of the scale. Nurses in nine Movement Disorder Clinics and one Outreach Programme participated. A total of 167 patients were asked to use the scale on three separate occasions, 1 month apart, without referring to the scores they had assigned to the scale in the previous month. Factor analysis identified four factors among the items in the scale: psychological, social, physical and financial. Internal consistency was 89.8% and the test-retest reliability was 72%. Construct validity was assessed by comparing factor scores and a global score between non-fluctuating patients and fluctuating patients in their 'off' state. The scores were significantly higher in the more severe 'off' state (p < 0.0001).     

Validation of a short disease specific quality of life scale for hemifacial spasm: correlation with SF-36

BACKGROUND: A short, practical, and validated quality of life (QoL) scale for hemifacial spasm (HFS) is not currently available. OBJECTIVES: To examine the reliability and validity of a short self-rating scale (HFS-7) by comparing HFS patients with healthy controls. We also evaluated the correlation of HFS-7 with the physical and mental domains of SF-36, a generic QoL scale. METHODS: Seven self-rating items (HFS-7) were administered to HFS patients and healthy controls. In addition, HFS patients answered the SF-36 questionnaire. The validity and reliability of HFS-7 were analysed and correlation between HFS-7 and SF-36 examined. RESULTS: A total of 178 subjects were enrolled in the study, including 85 HFS patients with mean age of 54.8 (SD 11.0) years, of whom 52 (61.2%) were women, and 93 controls with mean age of 51.4 (SD 10.0) years, of whom 59 (63.4%) were women. The test-retest intraclass correlation coefficient for the seven items was between 0.75 and 0.90 and Cronbach's coefficient of reliability for the HFS-7 scale was 0.88. Every item in HFS-7 discriminated between disease and controls (p<0.0001). The HFS-7 summary index correlated with the SF-36 summary score (Spearman's correlation r = -0.28, p = 0.009), in particular the mental health summary score (r = -0.416, p<0.0001) and the emotional domain (r = -0.466, p<0.00001). CONCLUSION: HFS-7 could prove useful as a simple clinical tool to assess and monitor QoL measures in HFS patients.     

Quality of life assessment in MND: development of a social withdrawal scale.

A scale to measure 'social withdrawal,' was developed specifically for use with MND patients. Scale design was based upon patient-focused interviews which were used to explore patients' concerns. The impact the condition had upon their social interactions with others was salient for all patients and affected their overall quality of life. Using issues raised by patients, a 23-item scale was generated to specifically and quantitatively measure social withdrawal and this scale was psychometrically evaluated. The scale was administered to a sample of 23 patients at varied stages of progression of MND, and to a control group of patients with arthritis with similar levels of physical disability. For MND patients withdrawal from the community was found to be closely related to severity of physical symptoms and depression. Specific patients were identified who are particularly susceptible to withdrawal and depression. Comparison of the pattern of withdrawal in the MND and arthritis patient groups suggested that there may be differences between the factors governing social withdrawal in different patient populations.     

Subjective quality of life. Critical look at a modern construct

The scientific usefulness of the popular construct "subjective quality of life"(QoL) is critically investigated in a psychiatric context. Six problem areas were chosen: QoL is rooted in different scientific traditions (area I) and characterized by definitional uncertainty (area II). It is conceptually and empirically confounded with several other psychosocial constructs and lacks clear causal specificity (area III). The operationalization of QoL comprises a great number of heterogeneous instruments (area IV), and there are additional problems created by methodological and statistical issues (area V).Finally, there is no integrative, theoretical model that can be tested empirically in a systematic way (area VI).These problems support the conclusion that subjective QoL is a preparadigmatic or scientifically immature concept which should be applied with caution and under strict methodological standards when used to answer clinically relevant questions.