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1.
Patient Relat Outcome Meas ; 12: 77-81, 2021.
Article in English | MEDLINE | ID: mdl-33986621

ABSTRACT

Hip dysplasia is a significant public health issue, representing the single largest cause for total hip arthroplasty in young adults. To gain insight into patient concerns and the impact of hip dysplasia on young adults, we developed a patient-centred outcome measure, the 'Quality of Life Impact and Concerns' (QoLI&C) measure. This short report provides additional evidence on test-retest reliability and suggests refinements to the measure to enhance its research and clinical utility.

2.
Bone Joint J ; 102-B(5): 611-617, 2020 May.
Article in English | MEDLINE | ID: mdl-32349599

ABSTRACT

AIMS: To identify a suite of the key physical, emotional, and social outcomes to be employed in clinical practice and research concerning Perthes' disease in children. METHODS: The study follows the guidelines of the COMET-Initiative (Core Outcome Measures in Effectiveness Trials). A systematic review of the literature was performed to identify a list of outcomes reported in previous studies, which was supplemented by a qualitative study exploring the experiences of families affected by Perthes' disease. Collectively, these outcomes formed the basis of a Delphi survey (two rounds), where 18 patients with Perthes' disease, 46 parents, and 36 orthopaedic surgeons rated each outcome for importance. The International Perthes Study Group (IPSG) (Dallas, Texas, USA (October 2018)) discussed outcomes that failed to reach any consensus (either 'in' or 'out') before a final consensus meeting with representatives of surgeons, patients, and parents. RESULTS: In total, 23 different outcome domains were identified from the systematic review, and a further ten from qualitative interviews. After round one of the Delphi survey, participants suggested five further outcome domains. A total of 38 outcomes were scored in round two of the Delphi. Among these, 16 outcomes were scored over the prespecified 70% threshold for importance (divided into six main categories: adverse events; life impact; resource use; pathophysiological manifestations; death; and technical considerations). Following the final consensus meeting, 14 outcomes were included in the final Core Outcome Set (COS). CONCLUSION: Core Outcome Sets (COSs) are important to improve standardization of outcomes in clinical research and to aid communication between patients, clinicians, and funding bodies. The results of this study should be a catalyst to develop high-quality clinical research in order to determine the optimal treatments for children with Perthes' disease. Cite this article: Bone Joint J 2020;102-B(5):611-617.


Subject(s)
Legg-Calve-Perthes Disease/psychology , Legg-Calve-Perthes Disease/surgery , Patient Reported Outcome Measures , Sickness Impact Profile , Adolescent , Child , Child, Preschool , Delphi Technique , Female , Humans , Interviews as Topic , Male , Parents/psychology , Qualitative Research , Systematic Reviews as Topic
3.
Patient Relat Outcome Meas ; 10: 283-298, 2019.
Article in English | MEDLINE | ID: mdl-31507333

ABSTRACT

PURPOSE: To explore the question of 'how to evaluate a qualitative patient-centred outcome measure', comprising predominantly open-ended items, including perhaps emojis, story writing and/or pictures, in a way that does not compromise the strictures of the qualitative paradigm, doing so in a credible and authoritative manner. The paper aims to promote debate and discussion in the measurement validation community. METHODS: Comprehensive literature review of three electronic databases (PubMed; SCOPUS; Web of Science/Knowledge) and searches of three outcome-focused journals. RESULTS: The vast majority (>90%) of the papers only used qualitative methods in the initial, in particular, content validation of a measure and then used (quantitative) psychometric validation procedures.  The remaining papers comprised articles that were either methodologically or methods focused and the role of qualitative research.  A number of key issues are raised, inter alia: giving primacy to the patient's perspective; exploring the meaning and interpretation respondents place on the concept and possible items in a measure; prioritising maximising meaningful discrimination from the respondent's perspective; ensuring face and content validity and relevance of items in the item content pool; and using appropriate qualitative methods, for example, concept elicitation, "think-aloud" and cognitive interviews and expert respondent panels/judges. This approach is applied to validate a child-friendly outcome measure for children with Perthes disease, a paediatric hip condition presenting primarily amongst male children aged 5-8 years. CONCLUSIONS: The core messages are to: (i) not force validation of a qualitative outcome measure into psychometric validation; but (ii) retain full adherence to the principles of the qualitative paradigm and employ procedures drawn from that paradigm. In this manner, primary emphasis would lie on issues of meaningfulness, face and content validity, the meaning of item and measure scores to respondents and, for a child-friendly measure, the child-friendliness of the measure.

4.
Patient Relat Outcome Meas ; 10: 187-204, 2019.
Article in English | MEDLINE | ID: mdl-31388318

ABSTRACT

Purpose: To develop and validate a patient-centered, evaluative outcome measure to assess patient-significant and identified impacts of the three pediatric hip conditions (the "Quality of Life, Concerns and Impact Measure" (QoLC&I)), for use by patients and clinicians in discussions over treatment options and the evaluation of treatment and post-operative rehabilitation. Patients and methods: The measure was developed through a qualitative study, via two web-based forums (patient narratives, n=84) and one specialist orthopedic adult hip clinic (conducting interviews, n=38). The draft (1) measure was piloted in an asynchronous web-based discussion group forum; following revision, it was piloted with a group of clinicians and patients to assess its patient and clinical utility, face and content validity. The final, refined prototype measure (QoLC&I, draft 3) was subjected to psychometric evaluation. Results: A total of 230 patients provided useable data for the psychometric analysis: 70% (160) had a confirmed diagnosis of Developmental Dysplasia of the Hip, 15% (35) Perthes, 11% (26) Slipped Upper Femoral Epiphyses; 4% (9) PHC not stated. The scale showed good acceptability (few missing items, good spread, low floor/ceiling effects), relevance (76% stating they would find the measure useful in their discussions with clinicians), and good internal consistency (Cronbach's α=0.98; average ICC=0.98). Hypotheses on convergent validity (with the General Health Questionnaire, to measure depression, and the International Hip Outcome Tool Short Form, to measure quality of life) and divergent validity (with the General Self-Efficacy Scale, to measure coping) were confirmed. Conclusion: The 64-item QoL&CI measure is a practical and valid measure addressing areas of clinical and patient significance and has potential value to assist patients and clinicians in discussions about treatment choices and treatment progress. Future research will address further psychometric testing (test-retest validity and responsiveness to change), in additional sites, and embedding the measure into clinical practice.

5.
Perspect Public Health ; 135(1): 27-36, 2015 Jan.
Article in English | MEDLINE | ID: mdl-25568200

ABSTRACT

AIMS: Promoting mental health and emotional wellbeing (EWB) in children and young people (YP) is vitally important for their psycho-social development. Critical review of the literature reveals a dearth of research that has explored the perspective of the child, adolescent or adult in this concept, with much research being intervention focused and promoted at crisis level. The current study aims to address this gap in understanding of young persons' and parents' perspectives. METHOD: A small-scale, exploratory qualitative study was conducted with YP, and parents of YP aimed at exploring the meaning of EWB and how it could be promoted. Data were collected via focus groups with 15 YP (aged 18-24 years) and 15 interviews with parents of a different group of YP. RESULTS: Study participants identified key constructs for good EWB as stability, coping ability, happiness, confidence, balance, empathy and being grounded. Feeling comfortable with self, managing and controlling emotions and having the confidence to persevere with challenges were all felt to contribute to a positive sense of EWB. Sources of support were overwhelmingly cited as family and friends, with schools identified as a potentially good environment for supporting and promoting the EWB of pupils. Participants stressed the need for a positive attitude change towards YP, advocating this as promoting a sense of belonging and community citizenship. A lay-informed 'recipe' for successful EWB promotion is drawn out, centred on the core goal of raising awareness and understanding of YP's EWB, in the YP themselves, their parents, schools and the wider community. CONCLUSIONS: This research provides key messages for society, policy makers, education and public health and healthcare practitioners for integration into the delivery of services for YP and families that include education on supporting EWB, activities for YP and a multi-agency approach to supporting families within the community.


Subject(s)
Emotions , Family Health , Health Promotion , Health Status , Mental Health , Adaptation, Psychological , Adolescent , England , Female , Focus Groups , Humans , Interviews as Topic , Male , Qualitative Research , Social Support , Young Adult
6.
BMC Geriatr ; 14: 138, 2014 Dec 17.
Article in English | MEDLINE | ID: mdl-25519741

ABSTRACT

BACKGROUND: There is evidence of under-detection and poor management of pain in patients with dementia, in both long-term and acute care. Accurate assessment of pain in people with dementia is challenging and pain assessment tools have received considerable attention over the years, with an increasing number of tools made available. Systematic reviews on the evidence of their validity and utility mostly compare different sets of tools. This review of systematic reviews analyses and summarises evidence concerning the psychometric properties and clinical utility of pain assessment tools in adults with dementia or cognitive impairment. METHODS: We searched for systematic reviews of pain assessment tools providing evidence of reliability, validity and clinical utility. Two reviewers independently assessed each review and extracted data from them, with a third reviewer mediating when consensus was not reached. Analysis of the data was carried out collaboratively. The reviews were synthesised using a narrative synthesis approach. RESULTS: We retrieved 441 potentially eligible reviews, 23 met the criteria for inclusion and 8 provided data for extraction. Each review evaluated between 8 and 13 tools, in aggregate providing evidence on a total of 28 tools. The quality of the reviews varied and the reporting often lacked sufficient methodological detail for quality assessment. The 28 tools appear to have been studied in a variety of settings and with varied types of patients. The reviews identified several methodological limitations across the original studies. The lack of a 'gold standard' significantly hinders the evaluation of tools' validity. Most importantly, the samples were small providing limited evidence for use of any of the tools across settings or populations. CONCLUSIONS: There are a considerable number of pain assessment tools available for use with the elderly cognitive impaired population. However there is limited evidence about their reliability, validity and clinical utility. On the basis of this review no one tool can be recommended given the existing evidence.


Subject(s)
Dementia/diagnosis , Pain Measurement/methods , Pain Measurement/standards , Pain/diagnosis , Review Literature as Topic , Adult , Aged , Aged, 80 and over , Dementia/epidemiology , Dementia/psychology , Female , Humans , Male , Middle Aged , Pain/epidemiology , Pain/psychology , Reproducibility of Results
7.
BMC Complement Altern Med ; 14: 201, 2014 Jun 25.
Article in English | MEDLINE | ID: mdl-24965334

ABSTRACT

BACKGROUND: Despite the increasing popularity of acupuncture, there remains uncertainty as to its effectiveness and how it brings about change. Particular questions are posed over whether acupuncture research has sufficient model validity and reflects acupuncture as practised. Exploring traditional acupuncture (TA) in practice should help to expose processes essential to the theory of TA. The aim of this study was to examine what TA practitioners aim to achieve, their rationale and how they follow this through in their practice. METHODS: A longitudinal study of TA for women with early breast cancer (EBC) was performed. Study participants comprised 14 women with EBC and two experienced TA practitioners, all taking part in in-depth interviews, conducted before and after receipt of up to 10 treatment sessions, and analysed using grounded theory methods. Additional data came from practitioner treatment logs and diaries. RESULTS: Practitioners sought long-term goals of increasing strength and enabling coping as well as immediate relief of symptoms. They achieved this through a continuous process of treatment, following through the recursive and individualized nature of TA and adjusted, via differential diagnosis, to the rapidly fluctuating circumstances of individual women. Establishing trust and good rapport with the women aided disclosure which was seen as essential in order to clarify goals during chemotherapy. This process was carefully managed by the practitioners and the resultant therapeutic relationship was highly valued by the women. CONCLUSION: This study provided insight into the interdependent components of TA helping to demonstrate the multiple causal pathways to change through the continuous process of new information, insights and treatment changes. A good therapeutic relationship was not simply something valued by patients but explicitly used by practitioners to aid disclosure which in turn affected details of the treatment. The therapeutic relationship was therefore a vital and integral part of the treatment process.


Subject(s)
Acupuncture Therapy/methods , Breast Neoplasms/therapy , Adult , Aged , Antineoplastic Combined Chemotherapy Protocols/therapeutic use , Breast Neoplasms/drug therapy , Breast Neoplasms/pathology , Combined Modality Therapy , Female , Humans , Interviews as Topic , Longitudinal Studies , Middle Aged , Treatment Outcome
8.
Healthcare (Basel) ; 2(2): 150-65, 2014 Mar 27.
Article in English | MEDLINE | ID: mdl-27429267

ABSTRACT

This paper reports on the perception of changing body image and well-being for patients who had undergone plastic surgery following massive weight loss. The exploratory, qualitative study was undertaken with 20 patients from one teaching hospital in the south of England. Semi-structured interviews were carried out and a thematic analysis of the data undertaken. The results provide important insights regarding body contouring influencing body image change and the adjustment process involved. The ability to pursue self-esteem and the accruing social benefits is emphasized in the interrelated sub themes including social acceptance, undoing depression and sexual vitality. Body contouring surgery following massive weight loss appears to facilitate improvement in body image and well-being. Adjustment to the changing body image is both empowering and challenging. Supportive educational programmes need to be developed to assist this transition to a more positive body image and appreciation; these could usefully include access to and involvement with patient support groups.

10.
Chronic Illn ; 9(1): 16-28, 2013 Mar.
Article in English | MEDLINE | ID: mdl-22659348

ABSTRACT

OBJECTIVE: To explore the experiences of young women with developmental dysplasia of the hip explicating the impact of peri-acetabular osteotomy surgery and recovery in the short and longer term. DESIGN: Postings of five, selected women on an online active message board aimed at women with developmental dysplasia of the hip were analysed. Interest lay on their postings after they had had peri-acetabular osteotomy surgery. Data analysis was performed through the approach of interpretive phenomenological analysis. RESULTS: The time length of the postings for the cases ranged from 1 year to 6 years, and the number of postings varied substantially, from 48 to 591. Two major concepts were prominent across participants' accounts. The first concept, 'body image', centred on affects on the women's self-esteem and body image. The second, 'the long road to recovery', highlighted 'the emotional and physical battle of learning to walk' and concerns with 'saving my joints'. CONCLUSION: Developmental dysplasia of the hip potentially provides a critical case for exploration of the process of how a disability can affect confidence, self-esteem and body image. Recovery from this condition requires enormous effort, resilience and commitment from the women.


Subject(s)
Acetabulum/surgery , Hip Dislocation, Congenital/psychology , Osteotomy/psychology , Adaptation, Psychological , Adult , Arthroplasty, Replacement, Hip/psychology , Arthroplasty, Replacement, Hip/rehabilitation , Body Image , Female , Hip Dislocation, Congenital/rehabilitation , Hip Dislocation, Congenital/surgery , Humans , Internet , Middle Aged , Osteotomy/rehabilitation , Recovery of Function , Retrospective Studies , Self Concept
11.
Midwifery ; 29(1): 75-85, 2013 Jan.
Article in English | MEDLINE | ID: mdl-22172741

ABSTRACT

UNLABELLED: Within the United Kingdom, the statutory supervision of midwives has a central role in both the provision of safe, high-quality maternity services and in the regulation of midwifery practice. Despite its long history, little is currently known about how midwives and their supervisors perceive and experience the statutory supervisory process. OBJECTIVE: to review and synthesise published research on midwives and supervisors of midwives' perceptions of the statutory supervision of midwives within the United Kingdom. METHODS: a systematic review of published, empirical literature was undertaken. This comprised a systematic search of six electronic databases, supplemented by hand-searching and contact with five subject experts. Each of the 19 papers that met the inclusion criteria were critically appraised, thematic analysis was used to systematically extract key themes and a narrative approach to data synthesis was adopted, giving greatest weight to studies of higher methodological quality. FINDINGS: three studies were rated as high quality, 12 good quality and four poor quality. Four overarching themes were identified; within each theme a range of perspectives were reported. These encompassed very positive views at one end of the continuum to very negative views at the other. The four themes reported variable understanding of the statutory supervisory framework and engagement with supervisory processes; contradictory views regarding the value of supervision and inconsistent relationships were described across the literature. Supportive relationships and high quality leadership were described as being empowering and developmental while perceived power imbalances resulted in supervision being portrayed as punitive and destructive. Resourcing supervision, by way of protected time and recompense was recognised to be a challenge. KEY CONCLUSIONS: this review highlighted considerable variability in both midwives' and supervisor's understanding of the nature and purpose of supervision as part of the NMC statutory framework. In particular, the potential for supervision to enhance personal development and midwives' practice varied according to the nature of the relationship between midwife and supervisor. The importance of supervision being fit for purpose and supervisors possessing the requisite knowledge, skills and attitudes to execute their role and responsibilities effectively cannot be underestimated. More research is needed to examine ways in which statutory supervision contributes to patient safety and high quality care and what opportunities there may be for the statutory framework to develop and empower midwives to work within current, and future, contexts of maternity care. IMPLICATIONS FOR PRACTICE: as 13 of the 19 studies included within this review were conducted prior to publication of the current rules and standards underpinning the statutory framework for midwifery within the UK (NMC, 2004, 2006), it is plausible that the evidence base does not reflect contemporary midwifery and statutory supervisory practice. Notwithstanding, the research included within this review clearly suggests a need to increase both midwives and supervisors of midwives' knowledge and understanding of the statutory framework.


Subject(s)
Maternal Health Services , Nurse Midwives/standards , Nursing, Supervisory/standards , Patient Care Management/organization & administration , Clinical Competence , Humans , Maternal Health Services/methods , Maternal Health Services/standards , Patient Safety/standards , Quality of Health Care , Social Perception , United Kingdom
12.
BMJ ; 345: e4407, 2012 Jul 13.
Article in English | MEDLINE | ID: mdl-22797843

ABSTRACT

OBJECTIVE: To assess the effectiveness of enhanced communication therapy in the first four months after stroke compared with an attention control (unstructured social contact). DESIGN: Externally randomised, pragmatic, parallel, superiority trial with blinded outcome assessment. SETTING: Twelve UK hospital and community stroke services. PARTICIPANTS: 170 adults (mean age 70 years) randomised within two weeks of admission to hospital with stroke (December 2006 to January 2010) whom speech and language therapists deemed eligible, and 135 carers. INTERVENTIONS: Enhanced, agreed best practice, communication therapy specific to aphasia or dysarthria, offered by speech and language therapists according to participants' needs for up to four months, with continuity from hospital to community. Comparison was with similarly resourced social contact (without communication therapy) from employed visitors. OUTCOME MEASURES: Primary outcome was blinded, functional communicative ability at six months on the Therapy Outcome Measure (TOM) activity subscale. Secondary outcomes (unblinded, six months): participants' perceptions on the Communication Outcomes After Stroke scale (COAST); carers' perceptions of participants from part of the Carer COAST; carers' wellbeing on Carers of Older People in Europe Index and quality of life items from Carer COAST; and serious adverse events. RESULTS: Therapist and visitor contact both had good uptake from service users. An average 22 contacts (intervention or control) over 13 weeks were accepted by users. Impairment focused therapy was the approach most often used by the speech and language therapists. Visitors most often provided general conversation. In total, 81/85 of the intervention group and 72/85 of the control group completed the primary outcome measure. Both groups improved on the TOM activity subscale. The estimated six months group difference was not statistically significant, with 0.25 (95% CI -0.19 to 0.69) points in favour of therapy. Sensitivity analyses that adjusted for chance baseline imbalance further reduced this difference. Per protocol analyses rejected a possible dilution of treatment effect from controls declining their allocation and receiving usual care. There was no added benefit of therapy on secondary outcome measures, subgroup analyses (such as aphasia), or serious adverse events, although the latter were less common after intervention (odds ratio 0.42 (95% CI 0.16 to 1.1)). CONCLUSIONS: Communication therapy had no added benefit beyond that from everyday communication in the first four months after stroke. Future research should evaluate reorganised services that support functional communication practice early in the stroke pathway. This project was funded by the NIHR Health Technology Assessment programme (project No 02/11/04) and is published in full in Health Technology Assessment 2012;16(26):1-160. TRIAL REGISTRATION: ISRCTN78617680.


Subject(s)
Aphasia/rehabilitation , Dysarthria/rehabilitation , Outcome Assessment, Health Care/statistics & numerical data , Quality of Life , Speech Therapy , Stroke Rehabilitation , Adult , Aged , Aged, 80 and over , Aphasia/etiology , Caregivers , Communication , Dysarthria/etiology , Female , Humans , Interpersonal Relations , Language Therapy , Male , Middle Aged , Patient Selection , Practice Guidelines as Topic , Regression Analysis , Severity of Illness Index , Stroke/complications , Treatment Outcome , United Kingdom , Visitors to Patients
13.
Health Expect ; 15(3): 267-82, 2012 Sep.
Article in English | MEDLINE | ID: mdl-21521430

ABSTRACT

BACKGROUND: Behavioural change interventions for persons with chronic illness draw on a variety of theoretical approaches including motivational interviewing and shared decision making. Health literacy provides an additional, potentially powerful explanatory framework to guide research and practice. OBJECTIVE: To examine the changes in the depth and detail of diabetes-related knowledge and confidence for persons with type 2 diabetes. DESIGN: Two-year, prospective, observational study, using questionnaire data at two time points (baseline and 2 years later) and in-depth interviews with a theoretically selected subsample. SETTING AND PARTICIPANTS: A total of 319 patients initially recruited from a deprived urban area in north-west England. INTERVENTION: Dedicated tele-carer education and support, tailored to the individual circumstances of the patient. MAIN OUTCOME MEASURES: Perceptions of confidence, levels of empowerment, learning for self-care and most helpful aspects of the intervention. RESULTS: Over 90% expressed confidence in keeping their blood sugar controlled, and high levels of perceived empowerment (mean = 4.25; 95% CI, 4.17-4.33) were found. Changes in the depth and detail of diabetes-related knowledge and confidence, from the specific to the more general, were observed and enhanced competence in translating knowledge into practice. DISCUSSION AND CONCLUSIONS: The intervention, built within a developed working partnership between tele-carer and patient, operated at two levels: health literacy, enhancing knowledge, developing personal skills and enabling self-control; and socio-psychological behavioural change, tailored to individuals within their socio-economic environments, enabling increased motivation and supportive problem-solving. Both approaches find reflection in the findings and provide powerful explanatory lenses to interrogate the data.


Subject(s)
Diabetes Mellitus, Type 2/psychology , Diabetes Mellitus, Type 2/therapy , Health Behavior , Health Literacy/methods , Telephone , Aged , Caregivers/psychology , Diet , Exercise , Female , Glycated Hemoglobin , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , Motivation , Patient Education as Topic/methods , Prospective Studies , Self Care/methods , Self Care/psychology , Self Efficacy
14.
Chronic Illn ; 8(1): 17-30, 2012 Mar.
Article in English | MEDLINE | ID: mdl-21965481

ABSTRACT

OBJECTIVE: To explore the experiences of young women adjusting to living with developmental dysplasia of the hip (DDH) and deciding on treatment choices. METHODS: Exploratory study of a set of online postings from one message board aimed at women with DDH. Postings of five, purposively selected users were explored from first posting to the time of their peri-acetabular osteotomy surgery. Data analysis was performed through the approach of interpretive phenomenological analysis. RESULTS: Two major concepts were prominent across participants' accounts; first, 'challenging the life course and identity as a young woman' and second, 'saving my joints'. Central was the women's description of how the diagnosis of DDH challenged the way they viewed themselves as young women. Once the women began to understand the long-term implications of having DDH they all began a quest to save their 'native joint', delaying the need for an artificial joint for as long as possible. CONCLUSION: The findings demonstrate the personal nature and diversity of the journeys the women followed. DDH potentially provides a critical case for exploration of the process of adjustment, as its treatment pathway and rehabilitation are lengthy and both physically and emotionally demanding.


Subject(s)
Adaptation, Psychological , Decision Making , Hip Dislocation, Congenital/psychology , Acetabulum/surgery , Adult , Chronic Disease , Female , Hip Dislocation, Congenital/surgery , Humans , Life Style , Middle Aged , Osteotomy , Social Adjustment , Social Media
15.
J Eval Clin Pract ; 18(2): 216-24, 2012 Apr.
Article in English | MEDLINE | ID: mdl-20860596

ABSTRACT

RATIONALE: Routine collection of outcome measures is advocated to improve quality of care. However, there has been scant investigation of how measurement tools are used in clinical practice and what impact they may have. This paper compares two neuro-rehabilitation teams, one which routinely used standardized measurement tools and the other which did not. We explore differences in communication and clinical decision making within multidisciplinary team (MDT) meetings to illuminate the influence measurement tools could have on clinical practice. METHOD: Non-participant observation of MDT meetings in two neurological rehabilitation units in England. Semi-structured interviews were also carried out with at least one member of each profession in each team. Grounded theory techniques were used to analyse the data. RESULTS: Differences in team members' communication within MDT meetings underscored differences in the process of clinical decision making within the teams. Using measurement tools provided a shared understanding to facilitate communication by focusing discussion on the patient's abilities rather than individual professionals' contributions. This led to differences in the way team members identified the nature and cause of patients' problems, monitored their progress and planned for discharge. They provided a 'neutral ground' to reach a shared perspective between professionals, thereby avoiding conflict. Externally, use of the tools enabled objective discussion with patients and their families about their progress and was a vehicle to facilitate giving bad news. CONCLUSION: Using standardized measurement tools can promote a patient-focused approach to care, thus facilitating treatment planning and clinical decision making.


Subject(s)
Communication , Decision Making , Nervous System Diseases/rehabilitation , Outcome Assessment, Health Care/methods , Patient Care Team/organization & administration , England , Health Services Research , Humans , Interviews as Topic , State Medicine
16.
BMC Med ; 9: 94, 2011 Aug 09.
Article in English | MEDLINE | ID: mdl-21827684

ABSTRACT

BACKGROUND: Herbal products obtained over the counter are commonly used in Europe, North America and Australia. Although there is concern about a lack of information provided to consumers to allow the safe use of these products, there has been no published research to confirm these fears. In this study, we evaluated written information provided with commonly used herbal products in the UK in advance of a European Union Directive issued in April 2011 that tightened regulations for some herbal products, including requirements to provide safety information. METHODS: Five commonly used herbal products were purchased from pharmacies, health food shops and supermarkets: St John's wort, Asian ginseng, echinacea, garlic and ginkgo. Written information provided with the products (on the package or on a leaflet contained in the package) was evaluated for inclusion of each of the key safety messages included in the monographs of the US National Center for Complementary and Alternative Medicine. Specifically, we looked for information on precautions (such as Asian ginseng not being suitable for people with diabetes), interactions with conventional medicines (such as St John's wort with the contraceptive pill and warfarin) and side effects (such as ginkgo and allergic reactions). RESULTS: Our analysis showed that, overall, 51 (75%) of 68 products contained none of the key safety messages. This included 4 of 12 St John's wort products, 12 of 12 ginkgo products, 6 of 7 Asian ginseng products, 20 of 21 garlic products and 9 of 13 echinacea products. The two products purchased that are registered under the new European Union regulations (for St John's wort) contained at least 85% of the safety messages. CONCLUSIONS: Most of the herbal medicine products studied did not provide key safety information which consumers need for their safe use. The new European Union legislation should ensure that St John's wort and echinacea products will include the previously missing information in due course. The legislation does not apply to existing stock. Depending on therapeutic claims made by manufacturers, garlic, ginkgo and Asian ginseng products may not be covered by the legislation and can continue to be bought without the safety information. Also, consumers will still be able to buy products over the internet from locations outside European Union jurisdiction. Potential purchasers need to know, in both the short term and the long term, how to purchase herbal products which provide the information they need for the safe use of these products.


Subject(s)
Drug Labeling/statistics & numerical data , Herbal Medicine , Nonprescription Drugs/adverse effects , Nonprescription Drugs/standards , Plants, Medicinal/adverse effects , Health Services Research , Humans , Nonprescription Drugs/administration & dosage , United Kingdom
17.
BMC Complement Altern Med ; 11: 22, 2011 Mar 17.
Article in English | MEDLINE | ID: mdl-21414187

ABSTRACT

BACKGROUND: Acupuncture can be described as a complex intervention. In reports of clinical trials the mechanism of acupuncture (that is, the process by which change is effected) is often left unstated or not known. This is problematic in assisting understanding of how acupuncture might work and in drawing together evidence on the potential benefits of acupuncture. Our aim was to aid the identification of the assumed mechanisms underlying the acupuncture interventions in clinical trials by developing an analytical framework to differentiate two contrasting approaches to acupuncture (traditional acupuncture and Western medical acupuncture). METHODS: Based on the principles of realist review, an analytical framework to differentiate these two contrasting approaches was developed. In order to see how useful the framework was in uncovering the theoretical rationale, it was applied to a set of trials of acupuncture for fatigue and vasomotor symptoms, identified from a wider literature review of acupuncture and early stage breast cancer. RESULTS: When examined for the degree to which a study demonstrated adherence to a theoretical model, two of the fourteen selected studies could be considered TA, five MA, with the remaining seven not fitting into any recognisable model. When examined by symptom, five of the nine vasomotor studies, all from one group of researchers, are arguably in the MA category, and two a TA model; in contrast, none of the five fatigue studies could be classed as either MA or TA and all studies had a weak rationale for the chosen treatment for fatigue. CONCLUSION: Our application of the framework to the selected studies suggests that it is a useful tool to help uncover the therapeutic rationale of acupuncture interventions in clinical trials, for distinguishing between TA and MA approaches and for exploring issues of model validity. English language acupuncture trials frequently fail to report enough detail relating to the intervention. We advocate using this framework to aid reporting, along with further testing and refinement of the framework.


Subject(s)
Acupuncture Therapy/methods , Acupuncture/methods , Clinical Trials as Topic , Fatigue/therapy , Models, Biological , Vascular Diseases/therapy , Breast Neoplasms/complications , Evidence-Based Medicine , Fatigue/etiology , Female , Humans , Research Design , Vascular Diseases/etiology , Vasomotor System
18.
Article in English | MEDLINE | ID: mdl-19505974

ABSTRACT

Ménière's syndrome is a long-term, progressive disease that damages the balance and hearing parts of the inner ear. To address the paucity of information on which evidence-based treatment decisions should be made, a systematic review of acupuncture for Ménière's syndrome was undertaken. The method used was a systematic review of English and Chinese literature, from six databases for randomized, non-randomized and observational studies. All studies were critically appraised and a narrative approach to data synthesis was adopted. Twenty-seven studies were included in this review (9 in English and 18 in Chinese languages): three randomized controlled trials, three non-randomized controlled studies and four pre-test, post-test designs. All but one of the studies was conducted in China. The studies covered body acupuncture, ear acupuncture, scalp acupuncture, fluid acupuncture point injection and moxibustion. The studies were of varying quality. The weight of evidence, across all study types, is of beneficial effect from acupuncture, for those in an acute phase or those who have had Ménière's syndrome for a number of years. The review reinforces the importance of searching for studies from English and Chinese literature. The transferability of the findings from China to a Western context needs confirmation. Further research is also needed to clarify questions around the appropriate frequency and number of treatment/courses of acupuncture. The weight of evidence suggests a potential benefit of acupuncture for persons with Ménière's disease, including those in an acute phase and reinforces the importance of searching for published studies in the Chinese language.

19.
Clin Rehabil ; 24(1): 74-81, 2010 Jan.
Article in English | MEDLINE | ID: mdl-20026577

ABSTRACT

OBJECTIVE: To explore the way in which standardized measurement tools are used in day-to-day clinical practice. DESIGN: Non-participant observation and semi-structured interviews. SETTING: Hospital-based adult neurorehabilition unit. PARTICIPANTS: The multidisciplinary team delivering rehabilitation in the unit. RESULTS: The multidisciplinary team used the measurement tools internally to establish the presence and severity of patients' impairments and activity limitations; predict recovery and discharge destination; inform treatment planning and monitor progress. They were used externally to demonstrate service effectiveness; communicate with patients, families and external agencies; enable other providers to plan continuing care and resource needs, and inform audit and service development. CONCLUSION: When used in everyday clinical practice by a multidisciplinary neurorehabilitation team, standardized measures were used to support and inform, rather than replace, clinical decision-making.


Subject(s)
Nervous System Diseases/rehabilitation , Treatment Outcome , Adult , Attitude of Health Personnel , Clinical Audit/methods , Hospital Units , Humans , Nervous System Diseases/diagnosis , Observation , Patient Care Team , Practice Patterns, Physicians' , Qualitative Research , Severity of Illness Index , State Medicine , United Kingdom
20.
Patient Educ Couns ; 80(2): 219-26, 2010 Aug.
Article in English | MEDLINE | ID: mdl-20006458

ABSTRACT

OBJECTIVE: To explore the way that patient-centred care is realised within a tele-carer behavioural change intervention. METHOD: In-depth, semi-structured interviews undertaken at years 1 and 3 with a purposively selected sample from the intervention group within a 3-year randomised controlled trial (RCT) of a telephone-based education and support for persons with type 2 diabetes, and interviews with the non-medically trained tele-carers and supervising diabetes specialist nurse. RESULTS: A four-phased flow of the patient-centred interactions was identified, which evolved over the process of the intervention. Initially, attention centred on building a picture for and of the patient and assessing their knowledge base. Later, focus moved towards understanding diabetes from the patient's perspective and advice-giving became more individualised. Throughout, the interaction dynamics varied for patients. CONCLUSION: This study provides insight into the development of patient-centred behaviours over time and the influence of patients on tele-carer communication styles. PRACTICE IMPLICATION: When adopting a patient-centred approach, tele-carers need to be flexible and recognise that patients vary in their knowledge, skills and psychological adaption to diabetes. Continuity of care and consistent contact is pivotal to patients being able to move through the various phases of their illness trajectory and make the transition towards improved self-care management.


Subject(s)
Diabetes Mellitus, Type 2/therapy , Patient-Centered Care/methods , Self Care , Telephone , Adult , Aged , Aged, 80 and over , Caregivers/psychology , Counseling , Diabetes Mellitus, Type 2/psychology , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , Patient Education as Topic , Patient-Centered Care/standards , Social Support , Treatment Outcome
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