[Show abstract][Hide abstract] ABSTRACT: Background:
Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers' outcomes is a common problem.
To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures' psychometric properties.
A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure.
The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts.
Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care.
A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required.
Preview · Article · Sep 2015 · Palliative Medicine
[Show abstract][Hide abstract] ABSTRACT: This scoping study was commissioned by Macmillan Cancer Support to explore the potential role of Patient-Reported Outcome Measures (PROMs) in helping to progress their programme on Living With and Beyond Cancer and to inform the work of the national cancer task force.
[Show abstract][Hide abstract] ABSTRACT: Background
Enhancing quality of life for people with long-term conditions by monitoring patient-reported outcome measure scores is a key domain of health care policy. This study investigated the responsiveness of patient-reported outcome measures for long-term conditions.MethodsA cohort survey was conducted in 33 primary care practices and 4485 patients (1334 asthma, 567 chronic obstructive pulmonary disease, 1121 diabetes, 525 epilepsy, 520 heart failure and 418 stroke) were sent a baseline survey containing a generic (EQ-5D) and a disease-specific measure. Baseline respondents were sent a follow-up after 1 year. Differences in scores for each long-term condition were assessed by paired t-tests. The relationship between scores and self-reported `change in health¿ was assessed by analysis of variance.ResultsThe baseline achieved a 38.4% response rate and the follow-up 71.5%. The only significant difference for the EQ-5D was found for the Visual Analogue Scale in heart failure between baseline and follow-up, and for change in health. Significant differences between baseline and follow-up scores were found on the disease-specific measures for 1 asthma dimension and 1 stroke dimension. No significant differences were found for other conditions. Significant differences between self-reported change in health and the disease-specific measures were found for 4 asthma dimensions and 2 stroke dimensions.Conclusions
Few significant differences were found between the baseline and follow up or between `change in health¿ and PROMs scores. This could be explained by the time frame of one year being too short for change to occur or by the PROMs not being responsive enough to change in a primary care sample. The latter is unlikely as the PROMs were in part chosen for their responsiveness to change. The baseline response rates may mean that the sample is not representative, and stable patients may have been more likely to participate. If PROMs are to be used routinely to monitor outcomes in LTCs, further research is needed to maximize response rates, to ensure that the PROMs used are reliable, valid and sensitive enough to detect change and that the time frame for data collection is appropriate.
Full-text · Article · Aug 2014 · Health and Quality of Life Outcomes
[Show abstract][Hide abstract] ABSTRACT: To evaluate the feasibility of using patient-reported outcome measures (PROMs) for long-term conditions (LTCs) in primary care.
A cohort postal survey conducted from September 2010 to April 2012.
Primary care practices (n=33) in London and the North-West of England.
4484 patients with a diagnosis of asthma, chronic obstructive pulmonary disease, diabetes, epilepsy, heart failure or stroke were sent a survey at baseline.
The main outcome was to evaluate the feasibility of and the recruitment strategies for collecting PROMs data in LTCs by assessing the response rates for the baseline and follow-up surveys. Secondary outcomes were the evaluation of change scores of the EQ-5D index and visual analogue scale (VAS) between baseline and follow-up surveys.
The baseline survey achieved a response rate of 38.4% (n=1721/4485) and at follow-up 71.5% (n=1136/1589). Response rates varied by LTC. Little change was found in health-related quality of life for the total sample (-0.001 for the EQ-5D index score and 0.12 for the EQ-5D VAS) between patients responding to both the baseline and follow-up surveys.
The response rate to the baseline survey was similar to that of other general practice surveys. Current UK policy aims to assess health service performance in LTCs by means of using PROMs. It thus would be desirable to improve response rates by making the invitation to self-reports of health-related quality of life more engaging for patients. Results on the EQ-5D score raise questions about optimal indicators for LTCs and appropriate timelines for assessment.
[Show abstract][Hide abstract] ABSTRACT: The Stroke Impact Scale (SIS) covers 8 dimensions and a composite disability score. This study evaluates the SIS in the UK context, and develops a single index and an 8-item short form.
Patients with a diagnosis of stroke were recruited through general practices in London and the North-West of England. Patients completed the SIS and the EQ-5D.
Internal consistency of the SIS dimensions and the disability score ranged from α 0.86 to 0.95. Complete data were available on 73 questionnaires (48.34%). Factor analysis suggested the 8 domains could be aggregated into a single index. A short-form SIS (SF-SIS) index was created by summing 1 item per dimension. Selected items were those that most highly correlated with their respective domain score (ρ ranged from 0.77-0.94, P<0.001). The SF-SIS index scores were highly correlated with those gained from the parent form (ρ=0.98; P<0.001). The correlation of the SIS index and SF-SIS index with the EQ-5D was identical (ρ=0.83; P<0.001). The disability score, whether scored from the dimensions of the SIS, or relevant items on the SF-SIS, were highly correlated (ρ=0.97; P<0.001).
The SIS covers aspects of health, which are of importance to stroke patients, and the dimensions were found to have high levels of internal consistency in the UK context. The amount of incomplete data suggests that the length of the questionnaire may present a substantial patient burden. In comparison to the parent form the SF-SIS can accurately provide the disability score and overall index score with considerable brevity.
[Show abstract][Hide abstract] ABSTRACT: Neurological conditions have a substantial impact on carers, with carer well-being having been shown to be influenced by a number of demographic, patient and caregiving factors. Support given to carers can lead to better coping. This study investigated the relationship between carer well-being and experiences with health and social services.
A cross-sectional survey was conducted of 1910 (37.4%) of carers of 5109 people with motor neuron disease (MND) (n=434, 54.9%), multiple sclerosis (MS) (n=721, 30.7%) and Parkinson's disease (PD) (n=755, 38.2%). Carers completed a generic health status measure (SF-12), a carer strain measure (Carer Strain Index- CSI) and a newly developed questionnaire on health and social care experiences. Data were analysed by analysis of variance with p set at <0.05.
Carer well-being was found to be compromised and differed significantly between the three conditions. Furthermore, a considerable number of carers experienced problems with aspects of health and social care, although there was no clear pattern according to the condition that was cared for. The total number of problems reported did not differ significantly between conditions but was significantly (all p<0.001) associated with carer quality of life (both physical and mental health) and strain, even when other influencing factors (demographic and caregiving variables) were corrected for. The association was particularly strong for carer strain, and less strong (but still significant) for quality of life.
The results show that carer well-being is compromised, in line with previous studies. Furthermore, the link of carer well-being to the number of problems reported suggests that minimizing problems experienced could improve carer well-being. This stresses the importance of health and social services appropriately supporting carers.
Full-text · Article · Jun 2013 · Health and Quality of Life Outcomes
[Show abstract][Hide abstract] ABSTRACT: To investigate patients' experiences of health and social care services in long-term neurological conditions in England.
Cross-sectional survey of 5209 patient members of the Motor Neurone Disease Association (MND, n = 890), Multiple Sclerosis Society (MS, n = 2345) or Parkinson's UK (PD, n = 1974). A questionnaire on patient experiences of health and social care was completed by 2563 (49%) (505 MND, 1157 MS and 901 PD).
A mixed picture of experiences of health and social care in MND, MS or PD was found with few problems reported for some aspects of services such as obtaining information about medication (n = 117, 6.1%). In contrast, problems with planning and integration of care were reported frequently, with 78.0% of patients not having a care plan and 61.9% reporting that services do not collaborate well in planning care. Other problems included delays with diagnosis, information about medication side effects, and management of conditions whilst in hospital. Significant differences between the three conditions were found for most aspects of care, with MND patients generally reporting fewer problems. The findings highlight which areas of health and social care need to be improved and monitored. While a larger sample size was obtained than in other studies, possible limitations include the sampling frame and the 49% response rate.
Planning and integration of care are key areas that require improvement.
No preview · Article · Feb 2013 · Journal of Health Services Research & Policy
[Show abstract][Hide abstract] ABSTRACT: Widely accepted quality indicators for headache care would provide a basis not only for assessment of care but also, and more importantly, for its improvement. The objective of the study was to identify and summarize existing information on such indicators: specifically, did indicators exist, how had they been developed, what aspects of headache care did they relate to and how and with what utility were they being used? A systematic review of the medical literature was performed. A total of 32 articles met criteria for inclusion. We identified 55 existing headache quality indicators of which 37 evaluated processes of headache care. Most were relevant only to specific populations of patients and to care delivered in high-resource settings. Indicators had been used to describe overall quality of headache care at a national level, but not systematically applied to the evaluation and improvement of headache services in other settings. Some studies had evaluated the use of existing disability and quality of life instruments, but their findings had not been incorporated into quality indicators. Existing headache care quality indicators are incomplete and inadequate for purpose. They emphasize processes of care rather than structure or outcomes, and are not widely applicable to different levels and locations of headache care. Furthermore, they do not fully incorporate accepted evidence regarding optimal methods of care. There is a clear need for consensus-based indicators that fully reflect patients’ and public-health priorities. Ideally, these will be valid across cultures and health-care settings.
Electronic supplementary material
The online version of this article (doi:10.1007/s10194-012-0466-1) contains supplementary material, which is available to authorized users.
Full-text · Article · Jun 2012 · The Journal of Headache and Pain
[Show abstract][Hide abstract] ABSTRACT: The objective of this study was to define "quality" of headache care, and develop indicators that are applicable in different settings and cultures and to all types of headache. No definition of quality of headache care has been formulated. Two sets of quality indicators, proposed in the US and UK, are limited to their localities and/or specific to migraine and their development received no input from people with headache. We first undertook a literature review. Then we conducted a series of focus-group consultations with key stakeholders (doctors, nurses and patients) in headache care. From the findings we proposed a large number of putative quality indicators, and refined these and reduced their number in consultations with larger international groups of stakeholder representatives. We formulated a definition of quality from the quality indicators. Five main themes were identified: (1) headache services; (2) health professionals; (3) patients; (4) financial resources; (5) political agenda and legislation. An initial list of 160 putative quality indicators in 14 domains was reduced to 30 indicators in 9 domains. These gave rise to the following multidimensional definition of quality of headache care: "Good-quality headache care achieves accurate diagnosis and individualized management, has appropriate referral pathways, educates patients about their headaches and their management, is convenient and comfortable, satisfies patients, is efficient and equitable, assesses outcomes and is safe." Quality in headache care is multidimensional and resides in nine essential domains that are of equal importance. The indicators are currently being tested for feasibility of use in clinical settings.
Full-text · Article · Jun 2012 · The Journal of Headache and Pain
[Show abstract][Hide abstract] ABSTRACT: Parkinson's disease (PD) can have substantial effects not only on the quality of life of those diagnosed with the condition but also upon the informal carers who provide support and assistance to them. However, to date no well-validated carer specific quality of life measure has been developed for carers of people with PD.
This paper documents the development and validation of a PD specific carer quality of life scale.
In depth interviews were undertaken with carers of people with PD. The interviews were transcribed and analysed thematically to derive a pool of potential items for the questionnaire. A pilot survey was used to refine the initial version of the questionnaire. A developmental survey was undertaken and the results analysed to produce the final 29-item measure. A validation survey was then undertaken to assess the construct validity and reliability of the measure.
Survey results suggest a 29-item questionnaire tapping four dimensions of quality of life (Social and Personal Activities, Anxiety and Depression, Self care, and Strain). Internal consistency reliability was found to be high for all domains. Data completeness was high. Construct validity (assessed by correlations with a generic measure of quality of life) confirmed prior hypotheses.
The 29-item Parkinson Disease Questionnaire for Carers (PDQ-Carer) is a short, meaningful quality of life instrument, which taps areas of specific salience and concern to PD carers.
No preview · Article · Feb 2012 · Parkinsonism & Related Disorders
[Show abstract][Hide abstract] ABSTRACT: Our objective was to investigate the relationship between support by health and social care services and caregiver well-being. A survey, including a generic health status measure (SF-12), a disease-specific measure for patients (ALSAQ-40), the Carer Strain Index (CSI) for caregivers and questions on experiences of health and social care services, was sent to patient members of the MND Association (UK) and their caregivers. A single 'problem score' was calculated from the experience questions and the relationship between the problem score with caregiver and patient well-being was analysed. Most caregivers reported at least one problem with support from services. The most common problems were services not valuing caregivers' experiences, and caregivers not feeling sufficiently involved in planning care. The problem score significantly increased with increasing caregiver strain and worsening mental health. The problem score was also increased as patient well-being decreased. The results suggest that caregiver strain was higher and mental health lower as the number of problems reported increased. A higher perceived lack of caregiver support was also related to a decrease in patient well-being, suggesting that caregivers' needs increase as the disease progresses. This emphasizes the importance of MND caregivers being appropriately supported by health and social care services in their caregiving role.
No preview · Article · Feb 2012 · Amyotrophic Lateral Sclerosis
[Show abstract][Hide abstract] ABSTRACT: The impact of Parkinson's disease (PD) on the quality of life of both patients and their carers has not been well documented.
This study describes the health status of both PD patients and caregivers as measured on a generic measure of health status (SF-12), and then explores to what extent patient self-reported health, as measured on the disease-specific Parkinson's Disease Questionnaire (PDQ-39), is associated with carer strain and self-reported quality of life.
A postal survey was carried out of both patients and caregivers through local branches of Parkinson's UK. Questionnaire packs were sent to those on the database with a diagnosis of PD. The patient was asked to give the carer questionnaire to their main caregiver, if they had one.
Results from the SF-12 suggests that PD has substantial adverse effects on both the physical and mental well-being of patients when compared with population norms. While carer physical health was not found to be substantially different from that of the general population, emotional health was lower than that of the general population. Furthermore, results suggest that the self-reported health status of PD patients is associated with higher levels of caregiver strain and poorer emotional health.
PD impacts on both the well being of both patients and caregivers; the data provide evidence that the health status of the patient, in particular their physical health, has a significant impact on the well-being of their caregiver.
No preview · Article · Feb 2011 · Parkinsonism & Related Disorders