Care Quality Of Life Research Articles

Understanding the quality of life of family carers of people with dementia: Development of a new conceptual framework.

BackgroundDementia is a major global health and social care challenge, and family carers are a vital determinant of positive outcomes for people with dementia. This study's aim was to develop a conceptual framework for the Quality of Life (QOL) of family carers of people with dementia.MethodsWe studied family carers of people with dementia and staff working in dementia services iteratively using in‐depth individual qualitative interviews and focus groups discussions. Analysis used constant comparison techniques underpinned by a collaborative approach with a study‐specific advisory group of family carers.ResultsWe completed 41 individual interviews with 32 family carers and nine staff and two focus groups with six family carers and five staff. From the analysis, we identified 12 themes that influenced carer QOL. These were organised into three categories focussing on person with dementia, carer, and external environment.ConclusionsFor carers of people with dementia, the QOL construct was found to include condition‐specific domains which are not routinely considered in generic assessment of QOL. This has implications for researchers, policy makers, and service providers in addressing and measuring QOL in family carers of people with dementia.

Dementia And Physical Activity (DAPA) trial of moderate to high intensity exercise training for people with dementia: randomised controlled trial

ObjectiveTo estimate the effect of a moderate to high intensity aerobic and strength exercise training programme on cognitive impairment and other outcomes in people with mild to moderate dementia.DesignMulticentre, pragmatic,...

PHP148 - Developing Content for a New Generic Qaly Measure: Results from a Qualitative Literature Review (E-Qaly Project)

To identify the themes to inform the content of a new generic quality adjusted life year (QALY) measure that can be used in economic evaluation across health, social care and public health, based on the views of users and beneficiaries of these services. The study was a targeted qualitative review of the literature. A systematic search was undertaken for four study arms: 1) primary qualitative work used in development of generic measures; 2) qualitative reviews on quality of life (QoL) for 17 health conditions; 3) qualitative reviews on QoL for informal carers as well as primary qualitative work on informal care measures; and 4) qualitative reviews on QoL for social carer users as well as primary qualitative work on social care measures. Framework analysis and synthesis was undertaken based on a conceptual model. The search yielded 27 primary qualitative studies for generic measures, 11 for informal care measures and 4 for social care measures. 137 qualitative reviews on QoL for health conditions were identified while there were 15 for informal care and 17 for social care. Targeted extraction and synthesis resulted in seven high level themes/domains (with sub-themes/domains): feelings and emotions (sadness, anxiety, enjoyment, vulnerability etc.), cognition, activity (leisure, activities of daily living, communication, mobility vision, meaningful activity), self-identity (self-esteem, dignity/respect), relationships and social connections (both positive and negative aspects), ‘coping, autonomy and control’ and physical sensations (pain, fatigue, discomfort). Apart from physical sensations, most of the other themes and sub-themes were relevant across both health and social care, including informal carers. The findings from the review have identified themes that go beyond health and that are relevant to patients, informal carers and social care users. The next step is to identify specific questions for the new generic measure.

‘Decimated’ nursing teams affect end of life care quality

‘Decimated’ nursing teams affect end of life care quality

A pilot study to evaluate the effectiveness of an individualized and cognitive behavioural communication intervention for informal carers of people with dementia: The Talking Sense programme.

People with dementia and family carers often experience difficulties communicating together. These difficulties are considered to contribute significantly to the depression, anxiety and negative feelings such as guilt often reported by dementia family carers. To develop and contribute to the theory and evidence base for single-component, psychosocial interventions that address these difficulties by evaluating the effectiveness of the Talking Sense programme which was designed to reflect existing best evidence. Talking Sense was delivered as an individualized, one to one, cognitive behavioural approach for developing knowledge, skills, thinking and behaviour of dementia family carers in managing communication difficulties. In this study, a randomized controlled trial compared 27 carers who completed three one-to-one individualized sessions using Talking Sense with 25 carers who received a single, knowledge-only, control discussion. There were no significant differences for the primary outcome measure of carer anxiety and depression as well as carer quality of life and general self-efficacy. Statistically significant results suggested carers receiving the Talking Sense intervention had fewer communication difficulties happening (p = 0.046) and felt more valued by their relatives (p = 0.046). A score close to significance (p = 0.052) suggested they perceived their relatives to be more communicatively competent. The intervention and research design were shown to be effective with low attrition and high adherence to treatment. A non-significant finding for the primary outcome measure does not support the potential for this intervention to effect carer anxiety and depression. The potential for perceived change in the person with dementia, with statistically fewer communication difficulties happening and the carer feeling more valued by their relative, was the most significant finding from this programme of research. Recommendations for further research are made.

Sociodemographic Factors and Health-Related Characteristics That Influence the Quality of Life of Grandparent Caregivers in Zimbabwe.

Very few studies have examined quality of life (QOL) in elderly carers of orphaned children in African settings. This study explored sociodemographic factors and health-related characteristics that influence QOL of grandparent carers in Zimbabwe. A cross-sectional study stratified by district was done to collect information on socioeconomic factors, health-related characteristics, and QOL of grandparent carers (N = 327; age: M = 62.4, SD = 11.2). Data were collected on socioeconomic factors, self-perceived health, health care access, chronic disease condition, health insurance status, types of health care services, and medications taken using the World Health Organization Quality of Life Questionnaire (WHOQOL-BREF). Bivariate and multivariate analyses were used to investigate the associations between QOL and the predictor variables. Caregivers’ level of education (odds ratio [OR] = 3.0; confidence interval [95% CI] = [1.0, 27]), fostering orphans only (OR = 0.4; 95% CI = [0.2, 0.7]), self-perceived health (OR = 10.2; 95% CI = [4.5, 25]), medical insurance (OR = 9.8; 95% CI = [1.9, 54]), and satisfaction with health care services (OR = 2.2; 95% CI = [1.2, 4.4]) were associated with QOL, after adjusting for all influencing factors. The results confirm that QOL is compromised by specific demographic and self-rated health characteristics. Thus, eradicating poverty and providing services and changing caregiver’s perceptions about self-rated health may enhance QOL among grandparent caregivers.

Legal and Ethical Issues among Oncology Nurses Toward End of Life Care

Background: Near end of life cancer patients are suffering from multiple distress that can affect their quality of life. Oncology nurses as primary care givers of cancer patients are committed to provide high quality care considering complex ethical issues to this extremely delicate and sensitive patient and their families. Purpose: To evaluate the ethical commitments of oncology nurses practice during the end of life period. Methods: After the usage of different electronic database with specific key words, the number of the found articles was 31 articles, but only six articles were met the inclusion criteria and were used for the current review. Results: This integrative review found that the oncology nurses are not completely adhere with ethical practice for terminally ill cancer patients. Lack of proper forms and documents combined with poor knowledge and understanding of nurses about ethical sensitivity was the major factors which led to poor end of life quality care and outcomes. The oncology nurse managers and their team members need to seriously take more responsibility with honesty and dignity to improve the situation. The oncology nurses should have the capability to identify the different needs of each patient specifically towards the late stage of disease progress. Implications and Recommendations: In order to maintain a high quality care at the end of life which is critically important to manage the symptoms as soon as possible, and for more enhancements, the oncology nurses need comprehensive programs to increase their awareness about the importance of ethical practice and care.

Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice

ABSTRACTObjective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL).Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses.Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both.Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL. The perspectives of people with dementia are informative when identifying needs.

Preventing skin problems in the older population

Dry skin, pressure ulcers and skin tears can have a serious impact on an older person's quality of life in care. In this article, Marie Todd explains how and when a person may have these problems, and what can be done to prevent them before they occur

Significance of quality of care for quality of life in persons with dementia at risk of nursing home admission: a cross-sectional study

BackgroundQuality of life in persons with dementia is, in large part, dependent on the quality of care they receive. Investigating both subjective and objective aspects of quality of care may reveal areas for improvement regarding their care, which information may ultimately enable persons with dementia to remain living in their own homes while maintaining quality of life. The aim of this study was to 1) describe self-reported quality of life in persons with dementia at risk of nursing home admission. 2) describe subjective and objective aspects of quality of care, 3) investigate the significance of quality of care for quality of life.MethodsA cross-sectional interview study design was used, based on questionnaires about quality of life (QoL-AD) and different aspects of quality of care (CLINT and quality indicators). The sample consisted of 177 persons with dementia living in urban and rural areas in Skåne County, Sweden. Descriptive and comparative statistics (Mann-Whitney U-test) were used to analyse the data.ResultsBased upon Lawton’s conceptual framework for QoL in older people, persons with pain showed significantly lower quality of life in the dimensions behavioural competence (p = 0.026) and psychological wellbeing (p = 0.006) compared with those without pain. Satisfaction with care seemed to have a positive effect on quality of life. The overall quality of life was perceived high even though one-third of the persons with dementia had daily pain and had had a weight loss of ≥4% during the preceding year. Furthermore, 23% of the persons with dementia had fallen during the last month and 40% of them had sustained an injury when falling.ConclusionThis study indicates need for improvements in home care and services for persons with dementia at risk for nursing home admission. Registered nurses are responsible for nursing interventions related to pain, patient safety, skin care, prevention of accidents, and malnutrition. Therefore, it is of great importance for nurses to have knowledge about areas that can be improved to be able to tailor interventions and thereby improve quality of care outcomes such as quality of life in persons with dementia living at home.

A comprehensive study comparing smokers and non-smokers with lung cancer in an urban minority population.

e18087 Background: Cigarette smoking is strongly associated with lung cancer; however, very few studies have been conducted in the urban minority population comparing various parameters between smokers and non-smokers with lung cancer. We investigated epidemiological profiles, histological subtypes, staging at diagnosis, survival after diagnosis and the quality of life. Methods: This retrospective study included urban minority population diagnosed with primary lung cancer at the Brooklyn Hospital Center between 2005-2016. The study population was divided into two groups based on smoking history and various parameters listed below were compared. The health care quality of life (HcQOL) was assessed using parameters of weight loss, cough/hemoptysis, shortness of breath, pain, opioid use and functional capacity. Results: Of the total 576 patients, 432 met inclusion criteria, who were divided into Group A (GA) - Smokers (n = 341 (78.9%)) and Group B (GB) - Non-Smokers (n = 91 (21.1%)). Majority of our study population were African American (GA 71.8%, GB 65.9%) followed by Hispanics. The prevalence of lung cancer was higher in females (GA 56%, GB 52.7%). Patients diagnosed with lung cancer before age 60 were 48.4% in GA versus 5.5% in GB. SCLC pathology was 20% in GA & 0% in GB; NSCLC pathology was 80% in GA & 100% in GB. At the time of diagnosis, 27% in GA had metastatic stage-4 (0% in GB), and 71.4% in GB had stage-1 (27% in GA) NSCLC. Less than 1 year survival was 15.5% in GA and 2.4% in GB; > 3 years survival was 32.3% in GA and 95.2% in GB. HcQOL measure of weight loss of > 10 pounds, hemoptysis, shortness of breath at rest, uncontrolled pain, opioid dependence and functional capacity < 1 block was 67.6%, 17%, 61.9%, 54.1%, 75.1% and 92.2% respectively in GA and 29.1%, 3.5%, 23.2%, 18.5%, 49.4% and 24.3% respectively in GB. A 6-minute walk test was abnormal in 77% of GA and 39.1% of GB. Conclusions: In comparison to non-smokers, smokers were diagnosed with lung cancer at a younger age, had advanced stages of cancer at the time of diagnosis, higher mortality and increased opioid dependence. Smokers had significantly poor HcQOL, which was supported by abnormal six-minute walk test results. Females had overall increased incidence of lung cancer.

Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review

ObjectiveNeurodegenerative diseases, such as dementia, have a profound impact on those with the conditions and their family carers. Consequently, the accurate measurement of family carers' quality of life (QOL) is...

Integration between oncology and palliative care: a plan for the next decade?

With the groundbreaking work of three Milan professors-Bonadonna, Veronesi, and Ventafridda-in the 1980s as the starting point, this article aims to shed light on the potential benefits of a closer and more formal integration between oncology and palliative care. More specifically, we address why integration is needed, how to do it, and the potential benefits to the patients, families, and society. The costs for cancer care are increasing rapidly. Especially during the last year of life, some treatments are futile and expensive without proven benefit for patients in terms of prolonged survival with adequate quality of life (QoL). The latest WHO definition of palliative care supports an upstream introduction of palliative care. More recent studies indicate that such an early integration has the potential to improve the patients' QoL and reduce their symptom burden. Successful integration presupposes formal structures and explicit obligations on how and when to integrate. The Norwegian model for palliative care is presented. It covers the range of oncologic and palliative services from community health care via the local hospital to the tertiary hospital and rests on standardized care pathway as the key instrument to promote integration. Our present state of knowledge indicates that integration does not shorten life; perhaps even the opposite. Futile oncological treatment can be reduced and the QoL of patients and carers improved. We need more evidence on the potential effect upon costs, but present data indicate that integration does not increase them.

Review on the Elements Related to the Development of End of Life Care Quality Evaluation Index that Enriches the Final Years of the Elderly

Purpose: A detailed literature review was conducted with the goal of extracting quality indicators that could function as the underlying data for developing a quality index for end-of-life care that would create more enriched final years for the elderly in Japan. Method: Literature review Results: Literature searched elderly people, terminal care, relief, the measure, the nature index, and the guideline in the keyword. We decided to make 34 pieces of literature which met all the adoption standards in 507 extracted pieces applicable to analysis. The index factors extracted used the categorization by subject (disease) conditions as their criterions and included 24 factors in cancerous disease, 12 in dementia disorder, 17 in disease-unspecific end-of-life care, 9 in spiritual or psychological pain, 15 for bereaved families, and 17 for caregivers. The research subjects extracted from the literature were mostly patients in the end-of-life period with cancerous or disease-unspecific illness, and the literature that stood out incorporated various theories. Conclusion: As the indexes for the quality indicators related to enriching end-of-life care for the elderly, a total of 94 index factors were extracted, including constitutional symptom, ADL, cognition, emotion, relationships with others, consideration for family and the bereaved, medical technology, psychological care, and others. These index factors demonstrated their validity in evaluating the multi-sided aspects of the quality of care and suggested the possibility of their application as a quality index evaluating factors for end-of-life care.

Cognitive impairment in Parkinson's disease: impact on quality of life of carers.

BackgroundThe quality of life (QoL) of informal caregivers of people with Parkinson's disease (PD) (PwP) can be affected by the caring role. Because of cognitive symptoms and diminished activities of daily living, in addition to the management of motor symptoms, carers of PwP and cognitive impairment may experience increased levels of burden and poorer QoL compared with carers of PwP without cognitive impairment. This study aimed to investigate the impact of cognitive impairment in PD upon QoL of carers.MethodsApproximately 36 months after diagnosis, 66 dyadic couples of PwP and carers completed assessments. PwP completed a schedule of neuropsychological assessments and QoL measures; carers of PwP completed demographic questionnaires and assessments of QoL. Factor scores of attention, memory/executive function and global cognition, as derived by principal component analysis, were used to evaluate cognitive domains.ResultsHierarchical regression analysis found lower Montreal Cognitive Assessment was a significant independent predictor of poorer carer QoL, in addition to number of hours spent caregiving, carer depression and PD motor severity. Attentional deficits accounted for the largest proportion of variance of carer QoL. Carers of PwP and dementia (n = 9) had significantly poorer QoL scores compared with PwP and mild cognitive impairment (n = 18) or normal cognition (n = 39) carers (p < 0.01).ConclusionsAttentional deficits were the strongest predictor of carer QoL compared with other cognitive predictors. Carers for those with PD dementia reported the poorest QoL. Interventions such as respite or cognitive behavioural therapy to improve mood and self‐efficacy in carers may improve carer QoL. © 2016 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons, Ltd.

The newly revised interview for deteriorations in daily living activities in dementia (R-IDDD2): distinguishing initiative from performance at assessment.

Minimal evidence exists on the detailed deficits in complex instrumental activities of daily living (IADLs) in mild dementia. The aim of this study was twofold, to validate a revised questionnaire focusing measuring the initiative and performance of IADLs in mild dementia and to explore the relationship between individual IADLs and patient and carer well-being. A total of 183 carers of people with mild dementia completed a further modified Revised Interview for Deterioration in Daily Living Activities 2 (R-IDDD2), which comprised new activities such as computer use, as well as sub-activities on the performance scale. Carers also completed questionnaires assessing patient quality of life (QoL-AD), carer quality of life (AC-QoL), and burden (GHQ-12). Persons with dementia were significantly poorer initiating than performing cleaning, doing repair work, and preparing a hot or cold meal, whereas being poorer at performing dressing and following current affairs. Using the computer, preparing a hot meal, finance, and medication management were most impaired, whereas more basic activities of dressing, washing oneself, brushing hair or teeth, and preparing a hot drink were most preserved. Poor initiative and performance on nearly all activities were significantly related to reduced carer and patient well-being. The R-IDDD2 offers a platform to comprehensively assess everyday functioning. Deteriorations in initiative and performance need to be targeted separately in interventions, as the former requires effective triggering and the latter structured training and support. Most activities were significantly associated with well-being, particularly patient quality of life so that improving any activity should improve well-being.

ISQUA16-2364ASSESSING THE PILLARS OF LIFE QUALITY FOR LONG-TERM CARE CLIENTS IN RESIDENTIAL AND COMMUNITY CONTEXTS

The goal of this research was to validate a scale for assessing 9 life quality indicators for long-term care clients with and without dementia, across ages and genders and with all types of chronic illness or disability in both residential and community care contexts. The basic elements of the assessment cover social capacity, self-efficacy, relationships, mood state and feelings of security. The Long-Term Care quality of life (LTC-Qol) scale fills a gap in reliable quality of life assessments in such contexts. The scale was developed and refined …

9. Drop attacks in Lennox–Gastaut Syndrome: Is Rufinamide the answer?

Introduction The purpose of this study is to determine whether Banzel (Rufinamide) improves the control of drop attacks in patients with Lennox–Gastaut Syndrome, and whether it controls other seizure types in LGS. Case report There are 10 patients with Lennox–Gastaut Syndrome who were candidates for participating in the Rufinamide retrospective cohort-controlled study. Presently, four of five patients are prescribed the drug Rufinamide. They are compared with the control group of LGS 4/5 subjects not on Rufinamide. Rufinamide dosage was started at 100–400 mg daily dose, while other anti-epileptic drugs (AEDs) were continued in the treated group. The control group continued on original AEDs without the addition of Rufinamide. The most common AEDs were Valproic acid, Clobazam, Lamotrigine, and Topiramate. Results After a minimal period of six months of Rufinamide, the treated group had fewer drop attacks than the control group. Approximately 80% of patients (4/5) responded positively to Rufinamide. The treated group was more alert by caregiver observation, and had less drug interactions with other AEDs. Overall an improved quality of life was found with the Rufinamide treatment, leading to continuation of the new drug past the study period. One patient dropped out from the study due to severe side effects to Rufinamide: (1/5 or 20%). Discussion Rufinamide at therapeutic doses reduced the frequency of drop attacks or tonic seizures more than other AEDs. There may also be some improvement in control of atypical absences and/or myoclonic seizures in LGS. A subjective presentation of compared quality of life care from Rufinamide for LGS needs to be confirmed in a larger controlled study by quantitative age – specific assessment.

Home telemonitoring and remote feedback between clinic visits for asthma.

Asthma is a chronic disease that causes reversible narrowing of the airways due to bronchoconstriction, inflammation and mucus production. Asthma continues to be associated with significant avoidable morbidity and mortality. Self management facilitated by a healthcare professional is important to keep symptoms controlled and to prevent exacerbations.Telephone and Internet technologies can now be used by patients to measure lung function and asthma symptoms at home. Patients can then share this information electronically with their healthcare provider, who can provide feedback between clinic visits. Technology can be used in this manner to improve health outcomes and prevent the need for emergency treatment for people with asthma and other long-term health conditions. To assess the efficacy and safety of home telemonitoring with healthcare professional feedback between clinic visits, compared with usual care. We identified trials from the Cochrane Airways Review Group Specialised Register (CAGR) up to May 2016. We also searched www.clinicaltrials.gov, the World Health Organization (WHO) trials portal and reference lists of other reviews, and we contacted trial authors to ask for additional information. We included parallel randomised controlled trials (RCTs) of adults or children with asthma in which any form of technology was used to measure and share asthma monitoring data with a healthcare provider between clinic visits, compared with other monitoring or usual care. We excluded trials in which technologies were used for monitoring with no input from a doctor or nurse. We included studies reported as full-text articles, those published as abstracts only and unpublished data. Two review authors screened the search and independently extracted risk of bias and numerical data, resolving disagreements by consensus.We analysed dichotomous data as odds ratios (ORs) while using study participants as the unit of analysis, and continuous data as mean differences (MDs) while using random-effects models. We rated evidence for all outcomes using the GRADE (Grades of Recommendation, Assessment, Development and Evaluation Working Group) approach. We found 18 studies including 2268 participants: 12 in adults, 5 in children and one in individuals from both age groups. Studies generally recruited people with mild to moderate persistent asthma and followed them for between three and 12 months. People in the intervention group were given one of a variety of technologies to record and share their symptoms (text messaging, Web systems or phone calls), compared with a group of people who received usual care or a control intervention.Evidence from these studies did not show clearly whether asthma telemonitoring with feedback from a healthcare professional increases or decreases the odds of exacerbations that require a course of oral steroids (OR 0.93, 95% confidence Interval (CI) 0.60 to 1.44; 466 participants; four studies), a visit to the emergency department (OR 0.75, 95% CI 0.36 to 1.58; 1018 participants; eight studies) or a stay in hospital (OR 0.56, 95% CI 0.21 to 1.49; 1042 participants; 10 studies) compared with usual care. Our confidence was limited by imprecision in all three primary outcomes. Evidence quality ratings ranged from moderate to very low. None of the studies recorded serious or non-serious adverse events separately from asthma exacerbations.Evidence for measures of asthma control was imprecise and inconsistent, revealing possible benefit over usual care for quality of life (MD 0.23, 95% CI 0.01 to 0.45; 796 participants; six studies; I(2) = 54%), but the effect was small and study results varied. Telemonitoring interventions may provide additional benefit for two measures of lung function. Current evidence does not support the widespread implementation of telemonitoring with healthcare provider feedback between asthma clinic visits. Studies have not yet proven that additional telemonitoring strategies lead to better symptom control or reduced need for oral steroids over usual asthma care, nor have they ruled out unintended harms. Investigators noted small benefits for quality of life, but these are subject to risk of bias, as the studies were unblinded. Similarly, some benefits for lung function are uncertain owing to possible attrition bias.Larger pragmatic studies in children and adults could better determine the real-world benefits of these interventions for preventing exacerbations and avoiding harms; it is difficult to generalise results from this review because benefits may be explained at least in part by the increased attention participants receive by taking part in clinical trials. Qualitative studies could inform future research by focusing on patient and provider preferences, or by identifying subgroups of patients who are more likely to attain benefit from closer monitoring, such as those who have frequent asthma attacks.

Clinical effectiveness and cost-effectiveness of physiotherapy and occupational therapy versus no therapy in mild to moderate Parkinson's disease: a large pragmatic randomised controlled trial (PD REHAB).

Cochrane reviews of physiotherapy (PT) and occupational therapy (OT) for Parkinson's disease found insufficient evidence of effectiveness, but previous trials were methodologically flawed with small sample size and short-term follow-up. To evaluate the clinical effectiveness and cost-effectiveness of individualised PT and OT in Parkinson's disease. Large pragmatic randomised controlled trial. Thirty-eight neurology and geriatric medicine outpatient clinics in the UK. Seven hundred and sixty-two patients with mild to moderate Parkinson's disease reporting limitations in activities of daily living (ADL). Patients were randomised online to either both PT and OT NHS services (n = 381) or no therapy (n = 381). Therapy incorporated a patient-centred approach with individual assessment and goal setting. The primary outcome was instrumental ADL measured by the patient-completed Nottingham Extended Activities of Daily Living (NEADL) scale at 3 months after randomisation. Secondary outcomes were health-related quality of life [Parkinson's Disease Questionnaire-39 (PDQ-39); European Quality of Life-5 Dimensions (EQ-5D)], adverse events, resource use and carer quality of life (Short Form questionnaire-12 items). Outcomes were assessed before randomisation and at 3, 9 and 15 months after randomisation. Data from 92% of the participants in each group were available at the primary time point of 3 months, but there was no difference in NEADL total score [difference 0.5 points, 95% confidence interval (CI) -0.7 to 1.7; p = 0.4] or PDQ-39 summary index (0.007 points, 95% CI -1.5 to 1.5; p = 1.0) between groups. The EQ-5D quotient was of borderline significance in favour of therapy (-0.03, 95% CI -0.07 to -0.002; p = 0.04). Contact time with therapists was for a median of four visits of 58 minutes each over 8 weeks (mean dose 232 minutes). Repeated measures analysis including all time points showed no difference in NEADL total score, but PDQ-39 summary index (curves diverging at 1.6 points per annum, 95% CI 0.47 to 2.62; p = 0.005) and EQ-5D quotient (0.02, 95% CI 0.00007 to 0.03; p = 0.04) showed significant but small differences in favour of the therapy arm. Cost-effective analysis showed that therapy was associated with a slight but not significant gain in quality-adjusted life-years (0.027, 95% CI -0.010 to 0.065) at a small incremental cost (£164, 95% CI -£141 to £468), resulting in an incremental cost-effectiveness ratio of under £4000 (£3493, 95% -£169,371 to £176,358). There was no difference in adverse events or serious adverse events. NHS PT and OT did not produce immediate or long-term clinically meaningful improvements in ADL or quality of life in patients with mild to moderate Parkinson's disease. This evidence does not support the use of low-dose, patient-centred, goal-directed PT and OT in patients in the early stages of Parkinson's disease. Future research should include the development and testing of more structured and intensive PT and OT programmes in patients with all stages of Parkinson's disease. Current Controlled Trials ISRCTN17452402. This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 20, No. 63. See the NIHR Journals Library website for further project information. The Birmingham Clinical Trials Unit, University of Birmingham, received support from the UK Department of Health up to March 2012. Catherine Sackley was supported by a NIHR senior investigator award, Collaboration for Leadership in Applied Health Research and Care East of England and West Midlands Strategic Health Authority Clinical Academic Training award.