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Crispin Jenkinson

Publications and source records attributed to Crispin Jenkinson.

At least 19 recordsLinked to original sources
PubMed2006

The use of the SF-36 questionnaire in adult survivors of childhood cancer: evaluation of data quality, score reliability, and scaling assumptions.

BACKGROUND: The SF-36 has been used in a number of previous studies that have investigated the health status of childhood cancer survivors, but it never has been evaluated regarding data quality, scaling assumptions, and reliability in this population. As health status among childhood cancer survivors is being increasingly investigated, it is important that the measurement instruments are reliable, validated and appropriate for use in this population. The aim of this paper was to determine whether the SF-36 questionnaire is a valid and reliable instrument in assessing self-perceived health status of adult survivors of childhood cancer. METHODS: We examined the SF-36 to see how it performed with respect to (1) data completeness, (2) distribution of the scale scores, (3) item-internal consistency, (4) item-discriminant validity, (5) internal consistency, and (6) scaling assumptions. For this investigation we used SF-36 data from a population-based study of 10,189 adult survivors of childhood cancer. RESULTS: Overall, missing values ranged per item from 0.5 to 2.9 percent. Ceiling effects were found to be highest in the role limitation-physical (76.7%) and role limitation-emotional (76.5%) scales. All correlations between items and their hypothesised scales exceeded the suggested standard of 0.40 for satisfactory item-consistency. Across all scales, the Cronbach's alpha coefficient of reliability was found to be higher than the suggested value of 0.70. Consistent across all cancer groups, the physical health related scale scores correlated strongly with the Physical Component Summary (PCS) scale scores and weakly with the Mental Component Summary (MCS) scale scores. Also, the mental health and role limitation-emotional scales correlated strongly with the MCS scale score and weakly with the PCS scale score. Moderate to strong correlations with both summary scores were found for the general health perception, energy/vitality, and social functioning scales. CONCLUSION: The findings presented in this paper provide support for the validity and reliability of the SF-36 when used in long-term survivors of childhood cancer. These findings should encourage other researchers and health care practitioners to use the SF-36 when assessing health status in this population, although it should be recognised that ceiling effects can occur.

Adolescent↗
PubMed2006

A patient-based questionnaire to assess outcomes of foot surgery: validation in the context of surgery for hallux valgus.

BACKGROUND: A patient-based outcome measure with good measurement properties is urgently needed for use in clinical trials of foot surgery. METHODS: We evaluated an existing foot pain and disability questionnaire (the Manchester Foot Pain and Disability Questionnaire) for its suitability as an outcome measure in the context of hallux valgus corrective surgery. Interviews with patients led to initial changes, resulting in 20 candidate questionnaire items with five response categories each. These were tested in a prospective study of 100 patients (representing 138 foot operations) undergoing hallux valgus corrective surgery. Analysis of underlying factor structure, dimensionality, internal reliability, construct validity and responsiveness of the questionnaire items in relation to (i) SF-36 general health survey and (ii) American Orthopaedic Foot & Ankle Society (AOFAS) hallux clinical scale resulted in a final 16 item questionnaire (the 'Manchester-Oxford Foot Questionnaire' (MOXFQ)), consisting of three domains/scales: 'Walking/standing' (seven items), 'Pain' (five items) and 'Social interaction' (four items) each having good measurement properties. All three domains were unidimensional. CONCLUSIONS: The new 16-item MOXFQ has good measurement properties in the context of outcomes assessment of surgery for hallux valgus. Future studies should assess the MOXFQ in the context of surgery for other foot and ankle conditions.

Adult↗
PubMed2006

Cross-cultural evaluation of the short form 8-item Parkinson's Disease Questionnaire (PDQ-8): results from America, Canada, Japan, Italy and Spain.

OBJECTIVE: The purpose of this study was to evaluate the psychometric properties of a short form health survey, the Parkinson's Disease Questionnaire (PDQ-8), cross-culturally, by comparing results gained from this instrument to the original longer form instrument-the PDQ-39. DESIGN: Data are from the Global Parkinson's Disease Survey. OUTCOMES: The 8-item Parkinson's Disease Questionnaire Single Index Score (PDQ-8-SI). In this study, we evaluate response rate, scaling assumptions, and data quality, in terms of comparability of results with the parent form from which the PDQ-8 was derived, of the instrument in the USA, Canada, Spain, Italy and Japan. RESULTS: The PDQ-8 was found to produce results that were very similar to the parent form across all five countries. However, it should be borne in mind that the PDQ-8 was nested within the PDQ-39, and results may be influenced by this. CONCLUSIONS: Results suggest that the PDQ-8 is a valid and reliable measure that can be appropriately and meaningfully used in cross-cultural studies.

Aged↗
PubMed2006

Measuring quality of life in women with endometriosis: tests of data quality, score reliability, response rate and scaling assumptions of the Endometriosis Health Profile Questionnaire.

BACKGROUND: To test the data quality, scaling assumptions and scoring algorithms underlying the Endometriosis Health Profile-30 (EHP-30) questionnaire: a questionnaire developed to measure the health-related quality of life (HRQoL) of women with endometriosis. METHODS: A cross-sectional postal survey to 727 women with surgically confirmed endometriosis recruited from an existing genetic linkage study (OXEGENE), The National Endometriosis Society (NES), UK and the outpatient gynaecology clinics of the Women's Centre, John Radcliffe Hospital, Oxford. Tests of data quality included secondary factor analysis, internal reliability consistency, descriptive statistics of the data, missing data levels, floor and ceiling effects and corrected item to total correlation scores. RESULTS: Six hundred and ten women (83.9%) returned the questionnaire. Secondary factor analysis verified the domain structure of the EHP-30. All 11 dimensions were internally reliable with Cronbach's alpha scores ranging from 0.80 to 0.96. Missing response rates ranged from 0.2 to 1.3%, and all items were found to be most highly correlated with their own (corrected) scale. CONCLUSIONS: Results confirmed the factor structure, scoring and scaling assumptions of the questionnaire. The high rate of data completeness indicated that the EHP-30 was acceptable and understandable to the respondents, thereby verifying its suitability for measuring the HRQoL of women with endometriosis.

Adolescent↗
PubMed2006

The Parkinson's Disease Questionnaire (PDQ-39): evidence for a method of imputing missing data.

BACKGROUND: The Parkinson's Disease Questionnaire (PDQ-39) is the most widely used Parkinson's specific measure of health status. It is increasingly used in treatment trials, sometimes as a primary end-point, where any missing data can potentially cause difficulties in analyses. OBJECTIVES: The purpose of this article is to evaluate the Expectation Maximisation (EM) algorithm for the imputation of missing dimension scores on the 39-item PDQ-39. METHODS: A postal survey of patients diagnosed with Parkinson's disease (PD). A total of 1,372 patients were surveyed and 839 (61.15%) questionnaires returned completed or partially completed. Of these, complete PDQ data were available in 715 (85.22%) cases. Data were deleted from this complete dataset and a sub-set of 200 respondents from this dataset and then imputed using the EM algorithm; results were then compared to the dataset before data deletion. RESULTS: Results gained from imputation of data closely mirrored that of the complete dataset in each case. Descriptive statistics, mean scores and spread of scores were almost identical between original and imputed datasets. Furthermore, original and imputed datasets were highly correlated [intra-class correlation coefficient (ICC) = 0.93 or greater], and mean differences were small (+/-1.00). CONCLUSIONS: The results suggest that the use of EM for the PDQ-39 provides data that closely mirrors the original when this has been deliberately removed. Consequently, EM is likely to be appropriate for trials using the PDQ that contains missing data points.

Adult↗
PubMed2006

Management of respiration in MND/ALS patients: an evidence based review.

This systematic review comprises an objective appraisal of the evidence in regard to the management of respiration in patients with motor neuron disease (MND/ALS). Studies were identified through computerised searches of 32 databases. Internet searches of websites of drug companies and MND/ALS research web sites, 'snow balling' and hand searches were also employed to locate any unpublished study or other 'grey literature' on respiration and MND/ALS. Since management of MND/ALS involves a number of health professionals and care workers, searches were made across multiple disciplines. No time frame was imposed on the search in order to increase the probability of identifying all relevant studies, although there was a final limit of March 2005. Recommendations for patient and carer-based guidelines for the clinical management of respiration for MND/ALS patients are suggested on the basis of qualitative analyses of the available evidence. However, these recommendations are based on current evidence of best practice, which largely comprises observational research and clinical opinion. There is a clear need for further evidence, in particular randomised and non-randomised controlled trials on the effects of non-invasive ventilation and additional larger scale cohort studies on the issues of initial assessment of respiratory symptoms, and management and timing of interventions.

Amyotrophic Lateral Sclerosis↗
PubMed2006

A Review: carers, MND and service provision.

Carers of people with MND may experience changes to their health and lifestyle. Statutory and voluntary organizations are able to support the carer in various ways. This review investigates the personal impact on carers and their experiences of service provision. A systematic search of online and grey literature was made for the period 1994-2004. Thirty-two key texts were retrieved and a narrative synthesis conducted. The main themes were: 1) Impact on carer: general health, emotional state, life satisfaction, socio-economic concerns, relationships, and protective factors; 2) Experience of service provision: primary care, health professionals, social care, written information, and voluntary organizations. There is a paucity of written documentation on the experience of assisting someone with MND. Data collected are diverse and sometimes contradictory. Sample sizes are often small and generalization difficult. Main findings show that maintenance of social support, activities, and a positive outlook may lessen the chance of ill health arising from long hours spent caring, and having a named coordinator may assist with access to resources, and provide practical and emotional support during and after the caring role. Carers may become ill themselves unless adequate support is given to them throughout the course of the disease.

Amyotrophic Lateral Sclerosis↗
PubMed2005

European patients' views on the responsiveness of health systems and healthcare providers.

BACKGROUND: Responsiveness to patients is now seen as a key characteristic of effective health systems. This study aimed to learn more about European people's views on the responsiveness of their country's health systems and healthcare providers. METHODS: Telephone survey with random samples of the populations in Germany, Italy, Poland, Slovenia, Spain, Sweden, Switzerland and the UK using random digit dialling. RESULTS: Responses were obtained from 8119 people aged 16 and over. Just over half the respondents said that doctors always listened carefully to them, gave them time for questions and provided clear explanations. Respondents from Switzerland and the UK reported consistently high rates of satisfaction with doctors' communication skills, while respondents from Poland were significantly less satisfied. Younger people were more critical than older people. Expectations of patient involvement in treatment decisions were high, particularly among younger people, with 74% indicating a desire to be actively involved. Most respondents felt they should have a choice of primary care doctor, specialist doctor and hospital, but less than half felt they had sufficient information to make an informed choice. There were significant variations between the countries in reported levels of involvement and in satisfaction with opportunities for choice. CONCLUSIONS: The results suggest that many European patients want a more autonomous role in health care decision-making. Policy-makers and clinicians should consider how to narrow the gap between public expectations and patients' experience.

Adolescent↗
PubMed2005

Patient attitudes to clinical trials: development of a questionnaire and results from asthma and cancer patients.

OBJECTIVE: To develop a questionnaire to assess patients' views of clinical trials, and to report the results from the questionnaire in two patient groups: asthma and cancer. DESIGN: A 43 item questionnaire asking patients about their views to clinical trials was developed on the basis of interviews with trialists and focus groups with patients. The questionnaire was mailed to patients with a diagnosis of either asthma or cancer. A set of items was then selected, via statistical analyses, to form the core of the questionnaire. PARTICIPANTS: Patients with a diagnosis of cancer in one NHS Hospital Trust, and patients with a diagnosis of asthma in two NHS Hospital Trusts. RESULTS: Completed questionnaires were received from 353 cancer patients and 578 asthma patients. Factor analyses of the data indicated that 22 items contributed to five dimensions: 'positive beliefs', 'safety', 'information needs', 'negative expectations' and 'patient involvement'. Differences between asthma and cancer patients on these dimensions were small. A regression of these dimension scores against a variable asking if patients would be willing to take part in trials found that 'safety' and 'information needs' did not contribute significantly to the model for either asthma or cancer patients. CONCLUSIONS: A questionnaire has been developed for use in assessing patients' views towards clinical trials. Results from the surveys reported here suggest that patient views about the importance of trials and beliefs about the value of patient involvement are likely to be predictive of whether or not patients will agree to take part in a study.

Adult↗
PubMed2005

Measuring outcomes for neurological disorders: a review of disease-specific health status instruments for three degenerative neurological conditions.

Health-related quality-of-life measures have been increasingly used in research into neurological disorders in recent years. The aim of this paper is to provide an objective appraisal of the evidence in regard to disease-specific quality-of-life measures used in research on health interventions for three degenerative neurological disorders: multiple sclerosis, motor neurone disease/amyotrophic lateral sclerosis and Parkinson's disease. A comprehensive search strategy was developed to include nine relevant electronic databases. Only studies pertaining to patient-based outcome measurements in multiple sclerosis, motor neurone disease and Parkinson's disease were included. We identified 76 eligible studies. As studies consisted of descriptive and cross-sectional survey study designs, results were reported qualitatively rather than in the form of a meta-analysis. Four disease-specific measures were found for Parkinson's disease, 11 for multiple sclerosis and one for motor neurone disease. We conclude that health-related quality-of-life measures are useful in assessing the impact of treatments and interventions for neurological disorders. However, further research is needed on the development of instruments using psychometric methods and on the validation, utilization and responsiveness of instruments to change.

Health Status↗
PubMed2004

Distribution-based criteria for change in health-related quality of life in Parkinson's disease.

BACKGROUND AND OBJECTIVE: To be useful, results from health-related quality of life (HRQoL) measures must be interpretable. The objective of this article is to examine statistical (distributional) approaches to interpretability. The standard error of measurement (SEM) and the standard error of the difference (S(diff)) are used in data on individuals with Parkinson's disease to calculate the minimum change scores required to be statistically meaningful for each dimension of an instrument to assess HRQoL in Parkinson's disease, the PDQ-39. METHODS: Data was collected from both a community and a clinic study; in both studies the PDQ-39 was administered at baseline and follow-up. RESULTS: The patterns of SEMs and S(diff)s were similar both across time periods and between samples, for all dimensions except Social Support. CONCLUSIONS: The results suggest that, for example, six points change on a 0-100 transformed scoring of the Mobility dimension may be considered on distributional grounds a minimum meaningful change. The demonstrated consistency across occasions and types of sample of SEMs and S(diff) for the majority of the dimensions of the PDQ-39, is evidence of the theoretically claimed advantage of this measure of sample independence, and supports use of this distributional approach to minimum meaningful change.

Adult↗
PubMed2004

Impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy.

The aim of this prospective cohort study was to evaluate the impact of gastrostomy tube feeding on the quality of life of carers of children with cerebral palsy (CP). Short-Form 36 version II was used to measure quality of life in carers of 57 Caucasian children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y 3mo) six and 12 months after insertion of a gastrostomy tube. Responses were calibrated against a normative dataset (Oxford Healthy Life Survey III). Six months after gastrostomy feeding was started, a substantial rise in mean domain scores for mental health, role limitations due to emotional problems, physical functioning, social functioning, and energy/vitality were observed. At 12 months after gastrostomy placement, carers reported significant improvements in social functioning, mental health, energy/vitality (mean increase >9.8 points;p<0.03), and in general health perception (mean increase 6.35 points;p=0.045) compared with results at baseline. Moreover, the values obtained for these domains at 12 months were not significantly different from the normal reference standard. Carers reported a significant reduction in feeding times, increased ease of drug administration, and reduced concern about their child's nutritional status. This study has demonstrated a significant, measurable improvement in the quality of life of carers after insertion of a gastrostomy feeding tube.

Adolescent↗
PubMed2004

Evaluating the responsiveness of the Endometriosis Health Profile Questionnaire: the EHP-30.

OBJECTIVES: To evaluate the sensitivity to change of the Endometriosis Health Profile-30 (EHP-30) questionnaire. SETTING: The Women's Center, John Radcliffe Hospital, Oxford. DESIGN: Postal survey to 66 women undergoing conservative surgery for the treatment of endometriosis-associated pain. The EHP-30 and the Short Form-36 (SF-36) were administered 2 weeks before the operation, and 4 months post-operatively. At T2 a transition question was included to evaluate changes in patients health status. To evaluate responsiveness effect sizes, standardised response means, the index of responsiveness and the minimally and clinically important differences were calculated. RESULTS: Forty (66.6%) patients returned the questionnaires at time 1 and 2. Overall less responsive effect size scores were found for the SF-36 (0.1-0.5) compared to the EHP-30 (-0.1-1.1) for all patients who had undergone treatment. Minimally important differences and the index of responsiveness were overall higher for the EHP-30 (0.4-2.0) compared to the SF-36 (0.1-1.0). Change scores for four of the five scales were significantly correlated with women's responses to the transition question. CONCLUSIONS: Results suggest that the EHP-30 is sensitive to change. Its application in clinical trials should prove beneficial in assessing the impact of medical and surgical interventions upon quality of life for women with endometriosis.

Adult↗
PubMed2004

Development of the Short Form Endometriosis Health Profile Questionnaire: the EHP-5.

OBJECTIVE: To develop and validate a short form version of the Endometriosis Health Profile-30 questionnaire which consists of a 30-item core questionnaire and a 23 item modular questionnaire. METHODS: Three studies were carried out to develop the Endometriosis Health Profile-5. Study 1: a short form version of the Endometriosis Health Profile-30 core questionnaire was developed. Study 2: the results were verified in a new data set. Study 3: a short form version of the 23 item modular questionnaire was produced. The modular questionnaire contains six dimensions which may not be applicable to every woman with endometriosis and is used to supplement the five scales on the core questionnaire when required. RESULTS: The final instrument contained 11 items: five items from the core questionnaire and six items from the modular questionnaire. The 95% confidence intervals for Study 1 indicated that the scale scores overlapped with each item score and were confirmed in the second analysis (study 2). Each item was most highly correlated to its parent scale and less with the remaining four core questionnaire scales which was verified in study 2. In both studies all correlations were significant at the 0.01 level (two tailed test). CONCLUSION: The Endometriosis Health Profile-5 is a reliable and valid short form questionnaire which can also be supplemented with a short form version of the modular questionnaire when required. It will be especially useful in clinical settings where a short and economical endometriosis health status measure is required.

Adolescent↗
PubMed2004

Health-related quality of life in amyotrophic lateral sclerosis: determining a meaningful deterioration.

This paper uses the standard error of measurement (SEM) and the standard error of the difference (S(diff)) in relation to data on individuals with amyotrophic lateral sclerosis (ALS) to calculate the minimum change scores required by statistical criteria for each dimension of the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40). Data collected from a longitudinal study was used to evaluate the usefulness of SEM and S(diff) criteria and to compare these criteria with an anchor-based approach in determining meaningful change. Questionnaires were completed on two occasions, 3 months apart. 764 questionnaires were returned. Questionnaires included the ALSAQ-40 and dimension specific transition items. The ALSAQ-40 is a disease specific health-related quality of life instrument for use in studies of patients with ALS or other motor neuron diseases. For all dimensions of the ALSAQ-40 the patterns of SEMs were similar over time. The results suggest that, for example, six points change on a 0-100 transformed scoring of the physical mobility dimension may be considered on distributional grounds a minimum meaningful change. The demonstrated consistency of SEMs for the dimensions of the ALSAQ-40 is empirical evidence of the theoretically claimed advantage of this measure of sample independence, and supports use of this distributional approach to calculate meaningful change.

Amyotrophic Lateral Sclerosis↗
PubMed2004

The impact of endometriosis upon quality of life: a qualitative analysis.

OBJECTIVE: to explore and describe the impact of endometriosis upon quality of life. SETTING: Nuffield Department of Obstetrics and Gynaecology, University of Oxford. DESIGN: qualitative study. SAMPLE: twenty-four women with a laparoscopic diagnosis of endometriosis. METHODS: face to face, individual, in-depth interviews. RESULTS: analysis of the data revealed 15 descriptive categories. Pain, physical functioning, role performance, social functioning, emotional well-being, relationship with the medical profession, treatment, sexual intercourse, energy and vitality, employment and infertility were found to be a particular concern for women with endometriosis. Physical appearance, lack of control and powerlessness, feelings of social isolation and concerns that their daughters might develop endometriosis were new areas found to be negatively affected by the condition. CONCLUSIONS: the impact of endometriosis-associated symptoms upon quality of life is multidimensional and more complex than just negatively affecting psychosocial parameters. Conducting in-depth interviews to explore the subjective experiences of patients with endometriosis enabled the diverse areas of quality of life to be identified. Adopting a qualitative methodology is essential for item generation on disease specific health status questionnaires.

Adult↗
PubMed2004

Comparing alternative Rasch-based methods vs raw scores in measuring change in health.

OBJECTIVES: To compare alternative Rasch-based approaches to the assessment of change over time through the example of an outcome measure used in total hip replacement surgery. SUBJECTS: Preoperative data were collected on 1424 patients receiving total hip replacement surgery; 1221 (86%) were sent follow-up questionnaires 1 year after surgery. MEASURES: The 12-item Oxford Hip Score (OHS) questionnaire administered preoperatively and 1-year postoperatively. METHODS: Subscales of the OHS for pain and functional impairment were examined for unidimensionality and item invariance. Two criteria were used to examine Rasch-based measurement of the 2 subscales. Advantages of Rasch measurement were examined in terms of whether it produced improved discrimination of outcomes of patients (1) undergoing different levels of complexity of surgery; and (2) reporting different retrospective judgments of the success of their surgery. Using the method of relative precision in relation to groups of patients distinguished in these 2 ways, change scores using Likert scoring methods were compared with 2 Rasch scoring methods: (1) separate analyses of the 2 time points; and (2) a common scale analysis obtained by stacking patients from the 2 time points. RESULTS: Less evidence for item invariance over time was found for the pain subscale. Other evidence supported treating subscales as unidimensional. Whichever Rasch scoring method was used, some gains in precision over standard Likert scoring were obtained in discriminating between groups of patients. CONCLUSIONS: The evidence from the current study suggests that there may be some gains in sensitivity to change of outcome measures from different Rasch-based scoring approaches.

Aged↗