Patients? perceptions of the value of PET in diagnosis and management of non-small call lung cancer, CHERE Working Paper 2007/5

A randomized controlled trial comparing the use of PET versus no PET provided the opportunity to investigate the value patients placed on any additional information provided by the PET scan. Interviews were undertaken with patients after their diagnosis had been made and, in the case of those who had surgery, once they had returned home following the operation. Content analysis was used to describe and analyse the text of the interviews. The aims of the research were to explore with people receiving PET their perceptions of its impact on aspects of well being, acquire a better understanding of how patients understand and deal with the outcomes (both benefits and dis-benefits) of PET, and assess the decision making processes regarding PET and subsequent treatment (surgical and non-surgical) from the patients? perspectives with the aim of providing information which can be used by providers of care in improving the process of care. Interviews were conducted with a sub-sample of 59 trial participants between February 2000 and July 2001, between six and eight weeks post-surgery. Thirty-three, (56%) had received a PET scan and 26 (44%) had not. The majority of patients consulted a surgeon in the expectation of having surgery to remove their cancer. Participants viewed PET (along with the other tests) as being most likely to provide information and reassurance to the surgeon, rather than having any impact on their (patients?) decisions. As far as these participants were concerned, there was only one important decision - whether to have surgery - and that decision was in the hands of the surgeon. All other decisions were subordinate to this major milestone and thus did not appear significant to patients. Thus, on its own, PET appeared to be of little additional value to this group of patients. Between 23%-45% of respondents reported some complications whilst in hospital or some difficulties at home but these were mostly of a relatively minor nature. Even though some patients reported that their health was worse than when they entered hospital, most participants reported that their health was improving at the time of the interview. Most participants had, at least briefly, discussed the issue of relapse with a doctor at a consultation subsequent to their surgery. The diagnosis of cancer is the key issue; all that happens to them subsequently seems to be determined by clinicians. It is important that clinicians explain the reasons for tests such as PET to patients and use diagnostic tests appropriately in the management of the disease. Understanding the experiences of patients provides useful information for clinicians in preparing patients for surgery for lung cancer and for cancer services in considering the level of ongoing support required for patients following surgery.Positron emission tomography, lung cancer

Validity, reliability and responsiveness of the EORTC QLQ-C30 and the EORTC QLQ-LC13 in Australians with early stage non-small cell lung cancer, CHERE Working Paper 2007/13

Aim: To assess the validity, reliability and responsiveness of two questionnaires, the QLQ-C30 and LC-13, as measures of health-related quality of life (HRQOL) in an Australian sample of people with early stage non-small cell lung cancer. Background: These two questionnaires are complementary components of the European Organisation for Research and Treatment of Cancer?s (EORTC?s) modular approach to measuring HRQOL: the QLQ-C30 is the core questionnaire, containing 30 items relevant to all cancers; the QLQ-LC13 contains 13 items specific to lung cancer. Methods: These two complementary questionnaires were assessed with data obtained from 183 participants of a randomised control trial investigating the use of Positron Emission Tomography in the management of stage I or II non-small cell lung cancer. A cohort of 173 participants, were treated by surgery and then followed for two years. Participants completed HRQOL questionnaires before the PET scan, before and after surgery, one month after surgery, and then four monthly for two years. Construct validity was tested with confirmatory factor analysis and correlation analysis was used to test for convergent/divergent validity. Discriminant validity was tested by assessing the sensitivity of the scales to the effects of moving from early to late stage disease, asymptomatic to mildly symptomatic, and to the effects of age, gender and number of comorbitities. Mean differences (standardized response means (SRM)) and effect sizes were estimated for: patients with Stage 1/11 and metastatic disease; ECOG score 0 and ECOG score 1; older and younger patients; men and women; patients with no comorbidities and those with 1 or more comorbidities. Reliability was assessed in terms of internal consistency and test-retest reliability. Responsiveness to the effects of major thoracic surgery, adjuvant radiotherapy, and disease recurrence was assessed by estimating mean differences (standardized response meansSRM?s and effect sizes for patients who underwent surgery, radiotherapy and whose disease recurred, respectively. Results: The factor structure reported previously was replicated in this sample, confirming the questionnaires? construct validity. Most scales demonstrated good to excellent internal consistency (Cronbach?s alpha range: 0.86 ? 0.94); the exceptions were the cognitive function (0.68) and nausea/vomiting scales (0.67). Test-retest reliability was generally good (intraclass correlation (ICC) range: 0.70 ? 0.81); the exceptions were the pain and nausea/vomiting scales (ICC 0.56 and 0.42). Most scales were sensitive to the large effect of moving from early to later stage disease with (SRM range: 21.3 ? 54.0; effect size range:1.14 ? 1.97 (except for emotional functioning: 13.7; 0.60)). The scales were also sensitive to small effects, detecting small to moderate differences for age (large for social functioning) and comorbidities, and small differences for moving from asymptomatic to mildly symptomatic disease, and for age. Responsiveness was also confirmed with most scales responsive to the large expected effects of surgery and disease progression ( SRM range: 21.6 ? 41.4; effect size range: 0.94 ? 1.89 (emotional functioning: 5.5; 0.19)). Conclusions: The QLQ-C30 and QLQ-LC13, when used together, provide a valid, reliable and responsive measure of HRQOL in Australians with early stage non-small cell lung cancer.Questionnaires, validity, reliability, responsiveness, QOL, lung cancer

Measuring health related quality of life in persons with dementia

Background: Dementia affects many aspects of the quality of the lives of people with dementia, particularly their ability to function socially and to live independently. Measuring health related quality of life (HRQOL) in thisarea poses unique challenges. This paper briefly outlines these challenges and describes instruments considered to be the most useful and appropriate. Methods: A literature search of CINAHL, EMBASE, MEDLINE and PSYCINFO was conducted to identify papers reporting the development, testing or application of instruments measuring HRQOL in persons with dementia. Review criteria were: availability; cost and ease of administration; suitability across disease stage; psychometric properties; and the availability of clinical and comparison data. Results: Six instruments were considered to be the most useful and appropriate: Quality of Life in Alzheimer\u27s Disease (QOLAD), DEMQOL, Quality of Life in Late-Stage dementia (QUALID), Dementia Quality of Life instrument (DQOL), Cornell Brown Scale for Quality of Life in Dementia (CBS), and the Alzheimer Disease-Related Quality of Life (ADRQOL). All are readily available, short and easy to administer. Psychometric properties are good and clinical data is available. QOLAD and DEMQOL are the most sensitive to disease stage and both have patient and proxy versions. QUALID is the only instrument specifically suited to late stage dementia. Conclusion: Measuring HRQOL in dementia poses difficulties relating to disease stage, self report vs. proxy measures, and subjective vs. objective measures. Several instruments have been found to be appropriate; however QOLAD and DEMQOL are the most suitable for use across a range of disease stages and have the advantage of having both patient and proxy versions available. QUALID is well suited for the nursing home setting

'It was easier because I had help' : mothers' reflections on the long-term impact of sustained nurse home visiting

Objectives: This qualitative descriptive study sought women’s views of the Maternal Early Childhood Sustained Home-visiting (MECSH) program they received from prior to birth to child-age 2-years. MECSH is a structured nurse home visiting program for a broad range of women of all ages (both primiparous and multiparous) who experienced stressors in pregnancy that could negatively impact on maternal and child outcomes. Women were asked for their perceptions of how and why the intervention worked for them, and the impact of the intervention on their subsequent parenting to child-age 5-years. Methods: Thirty-six women participated in a semi-structured interview when their child commenced formal schooling at age 5-years. Recorded and transcribed data were analysed using qualitative content analysis. Results: Women described the importance of a positive relationship with the nurse, and nurses’ availability and responsiveness as critical to positive impacts. The interventions they recalled receiving were consistent with the comprehensive MECSH program model. The intervention impacted on women’s emotional well-being, confidence and help-seeking behaviour, and positively impacted on their parenting of their MECSH program child and their older and subsequent children. A small number of women reported feeling stressed and disconnected from services following program completion, however, most women continued to apply the learnings from the program. Conclusions: Overall women reported positive impacts not just for themselves and their parenting abilities during the 2-year intervention program, but also described ongoing benefit to their subsequent parenting in the preschool period

Recommended measures for the assessment of behavioral disturbances associated with dementia

Objective: The study reviewed all the published instruments used for the assessment, diagnosis, screening, and outcomes monitoring/evaluation of behavioral disturbances associated with dementia (BDAD) to recommend a set of psychometrically valid measure

Recommended measures for the assessment of behavioral disturbances associated with dementia

Objective: The study reviewed all the published instruments used for the assessment, diagnosis, screening, and outcomes monitoring/evaluation of behavioral disturbances associated with dementia (BDAD) to recommend a set of psychometrically valid measures for clinicians and researchers to use, across a range of different practice settings. Methods: The study involved a broad scoping search, followed by a series of in-depth literature reviews on 29 instruments using scientific literature databases (MEDLINE, PsycINFO, CINAHL, and the Cochrane Library) and various national, international government, and government agency websites and professional organization websites. External consultations from measurement, clinical and research experts in dementia care, consumer representatives, and policy/decision makers, were sought in selecting the best instruments and in making the final recommendations. Findings: Key attributes and psychometric properties of a short list of five instruments were measured against prespecified criteria. The Neuropsychiatry Inventory (NPI) and the Behavioral Pathology in Alzheimer's Disease Rating Scale (BEHAVE-AD) were rated as the best measures for assessment of behavioral disturbances, followed by the Consortium to Establish a Registry for Alzheimer's Disease-Behavior Rating Scale for Dementia (CERAD-BRSD), the Dementia Behavior Disturbance Scale, and the Neurobehavioral Rating Scale. Conclusion: The use of valid and standardized outcome measures for the assessment of BDAD is critical for epidemiological studies, prevention, early intervention and treatment of dementia conditions, and funding for relevant healthcare services. The review recommends the NPI and BEHAVE-AD as the most appropriate measures for both clinical and research, whereas the CERAD-BRSD is suited better for research. The review was designed for the Australian context; however, the findings are applicable in other developed countries. © 2011 American Association for Geriatric Psychiatry

Child and family outcomes of a long-term nurse home visitation programme: a randomised controlled trial

Objective: to investigate the impact of a long-term nurse home visiting programme, embedded within a universal child health system, on the health, development and well-being of the child, mother and family. Design Randomised controlled trial. Setting/participants: 208 (111 intervention, 97 comparison) eligible at-risk mothers living in a socioeconomically disadvantaged area in Sydney, booking into the local public hospital for confinement. Intervention: a sustained and structured nurse home visiting antenatal and postnatal parenting education and support programme. Control: usual universal care. Main outcome measures: the quality of the home environment for child development (12–24 months), parent–child interaction and child mental, psychomotor and behavioural development at 18 months. Results: mothers receiving the intervention were more emotionally and verbally responsive (HOME observation) during the first 2 years of their child's life than comparison group mothers (mean difference 0.5; 95% CI 0.1 to 0.9). Duration of breastfeeding was longer for intervention mothers than comparison mothers (mean difference 7.9 weeks; 95% CI 2.9 to 12.9). There was no significant difference in parent–child interaction between the intervention and comparison groups. There were no significant overall group differences in child mental, psychomotor or behavioural development. Mothers assessed antenatally as having psychosocial distress benefitted from the intervention across a number of areas. Conclusion: this sustained nurse home visiting programme showed trends to enhanced outcomes in many, but not all, areas. Specifically, it resulted in clinically enhanced outcomes in breastfeeding duration and, for some subgroups of mothers, women's experience of motherhood and children's mental development