Cystic fibrosis research in allied health and nursing professions

This report is the result of the "Allied Health and Nursing Professions Working Group" meeting which took place in Verona, Italy, November 2009, which was organised by the European Cystic Fibrosis Society, and involved 32 experts. The meeting was designed to provide a "roadmap" of high priority research questions that can be addressed by Allied Health Professionals (AHP) and nursing. The other goal was to identify research skills that would be beneficial to AHP and nursing researchers and would ultimately improve the research capacity and capability of these professions. The following tasks were accomplished: 1) a Delphi survey was used to identify high priority research areas and themes, 2) common research designs used in AHP and nursing research were evaluated in terms of their strengths and weaknesses, 3) methods for assessing the clinimetric and psychometric properties, as well as feasibility, of relevant outcome measures were reviewed, and 4) a common skill set for AHPs and nurses undertaking clinical research was agreed on and will guide the planning of future research opportunities. This report has identified important areas and themes for future research which include: adherence; physical activity/exercise; nutritional interventions; interventions for the newborn with CF and evaluation of outcome measures for use in AHP and nursing research. It has highlighted the significant challenges AHPs and nurses experience in conducting clinical research, and proposes strategies to overcome these challenges. It is hoped that this report will encourage research initiatives that assess the efficacy/effectiveness of AHP and nursing interventions in order to improve the evidence base. This should increase the quality of research conducted by these professions, justify services they currently provide, and expand their skills in new areas, with the ultimate goal of improving care for patients with CF.

A systematic review of evidence-based assessment practices by allied health practitioners for children with cerebral palsy

AIM: The routine use of psychometrically robust assessment tools is integral to best practice. This systematic review aims to determine the extent to which evidence-based assessment tools were used by allied health practitioners for children with cerebral palsy (CP).

METHOD: The Preferred Reporting Items for Systematic Reviews and Meta-Analysis protocols 2015 was employed. A search strategy applied the free text terms: 'allied health practitioner', 'assessment', and 'cerebral palsy', and related subject headings to seven databases. Included articles reported assessment practices of occupational therapists, physiotherapists, or speech pathologists working with children with CP aged 0 to 18 years, published from the year 2000.

RESULTS: Fourteen articles met the inclusion criteria. Eighty-eight assessment tools were reported, of which 23 were in high use. Of these, three tools focused on gross motor function and had acceptable validity for use with children with CP: Gross Motor Function Measure, Gross Motor Function Classification System, and goniometry. Validated tools to assess other activity components, participation, quality of life, and pain were used infrequently or not at all.

INTERPRETATION: Allied health practitioners used only a few of the available evidence-based assessment tools. Assessment findings in many areas considered important by children and families were rarely documented using validated assessment tools.

Improving allied health professionals' research implementation behaviours for children with cerebral palsy: protocol for a before-after study

BACKGROUND: Cerebral palsy is a permanent disorder of posture and movement caused by disturbances in the developing brain. It affects approximately 1 in every 500 children in developed countries and is the most common form of childhood physical disability. People with cerebral palsy may also have problems with speech, vision and hearing, intellectual difficulties and epilepsy. Health and therapy services are frequently required throughout life, and this care should be effective and evidence informed; however, accessing and adopting new research findings into day-to-day clinical practice is often delayed.

METHODS/DESIGN: This 3-year study employs a before and after design to evaluate if a multi-strategy intervention can improve research implementation among allied health professionals (AHPs) who work with children and young people with cerebral palsy and to establish if children's health outcomes can be improved by routine clinical assessment. The intervention comprises (1) knowledge brokering with AHPs, (2) access to an online research evidence library, (3) provision of negotiated evidence-based training and education, and (4) routine use of evidence-based measures with children and young people aged 3-18 years with cerebral palsy. The study is being implemented in four organisations, with a fifth organisation acting as a comparison site, across four Australian states. Effectiveness will be assessed using questionnaires completed by AHPs at baseline, 6, 12 and 24 months, and by monitoring the extent of use of evidence-based measures. Children's health outcomes will be evaluated by longitudinal analyses.

DISCUSSION: Government, policy makers and service providers all seek evidence-based information to support decision-making about how to distribute scarce resources, and families are seeking information to support intervention choices. This study will provide knowledge about what constitutes an efficient, evidence-informed service and which allied health interventions are implemented for children with cerebral palsy.

TRIAL REGISTRATION: Trial is not a controlled healthcare intervention and is not registered.

General and Respiratory Health Outcomes in Adult Survivors of Bronchopulmonary Dysplasia: A Systematic Review

Background: The purpose of this systematic literature review was to examine current empirical research on general and respiratory health outcomes in adult survivors of bronchopulmonary dysplasia (BPD).

Methods: We searched seven databases up to the end of November 2010 (MEDLINE, PubMed, EMBASE, PsycINFO, Maternity and Infant Care, Cumulative Index of Nursing and Allied Health Literature, and Web of Knowledge). We independently screened and included only those studies concerning the assessment of outcome measures in adult survivors of BPD. Data on methodologic design and findings were extracted from each included study; in addition, the methodologic quality of each study was assessed using the Critical Appraisal Skills Programme checklist.

Results: Fourteen cohort studies met the review criteria. Of those, a total of eight studies were considered to be of high quality (score 9-12), five of moderate quality (score 5-8), and only one was of low quality (score 0-4). In all studies of adult survivors of BPD, differences were found between the index and control groups, suggesting that many adults survivors of BPD who were born preterm or with very low birth weight had more respiratory symptoms and pulmonary function abnormalities compared with their peers. Five studies concerning radiologic findings reported structural changes persisting into adulthood. Findings from three studies suggested impairment in exercise capacity, although firm conclusions were limited by the small sample size in the studies reviewed.

Conclusions: Compared with adults born at term, adult survivors of BPD have more impairment in general and respiratory health, which does not seem to diminish over time.

Measuring horizontal integration among health care providers in the community: An examination of a collaborative process within a palliative care network

In many countries formal or informal palliative care networks (PCNs) have evolved to better integrate community-based services for individuals with a life-limiting illness. We conducted a cross-sectional survey using a customized tool to determine the perceptions of the processes of palliative care delivery reflective of horizontal integration from the perspective of nurses, physicians and allied health professionals working in a PCN, as well as to assess the utility of this tool. The process elements examined were part of a conceptual framework for evaluating integration of a system of care and centred on interprofessional collaboration. We used the Index of Interdisciplinary Collaboration (IIC) as a basis of measurement. The 86 respondents (85% response rate) placed high value on working collaboratively and most reported being part of an interprofessional team. The survey tool showed utility in identifying strengths and gaps in integration across the network and in detecting variability in some factors according to respondent agency affiliation and profession. Specifically, support for interprofessional communication and evaluative activities were viewed as insufficient. Impediments to these aspects of horizontal integration may be reflective of workload constraints, differences in agency operations or an absence of key structural features.

Systematically retrieving research – a case study evaluating seven databases.

Objective: Developing the scientific underpinnings of social welfare requires effective and efficient methods of retrieving relevant items from the increasing volume of research. Method: We compared seven databases by running the nearest equivalent search on each. The search topic was chosen for relevance to social work practice with older people. Results: Highest sensitivity was achieved by Medline (52%), Social Sciences Citation Index (46%) and Cumulative Index of Nursing and Allied Health Literature (CINAHL) (30%). Highest precision was achieved by AgeInfo (76%), PsycInfo (51%) and Social Services Abstracts (41%). Each database retrieved unique relevant articles. Conclusions: Comprehensive searching requires the development of information management skills. The social work profession would benefit from having a dedicated international database with the capability and facilities of major databases such as Medline, CINAHL, and PsycInfo.

Utility, Caller, and Patient Profile of a Novel Chemotherapy Telephone Helpline Service Within a Regional Cancer Centre in Northern Ireland

Background: The telephone is an accepted and useful means of communication for the management of patient care. The Chemotherapy Telephone Helpline (CTH) service, located in a large inner-city Trust within the United Kingdom, is a unique nurse-led service within Northern Ireland.

Objective: The objective of the study was to investigate the utility, caller, and patient profile of a novel CTH.

Methods: This was a retrospective study of telephone contacts during 2007 to the CTH. Calls were categorized by caller and patient characteristics, reason for call, and subsequent action.

Results: A total of 7498 calls were made to the CTH during 2007. Of these, 25.6% occurred outside 8AM-4PM. Callers included patients (45.8%), lay carers (31%), and health care professionals (20.5%); 35.2% of calls concerned patients with polysymptomatic problems; 36.8% of calls led directly to patients being medically assessed.

Conclusions: The utility of the CTH service confirms the need of this nurse-led service. This service facilitates access to specialist advice and support for patients, their families, and allied health care professionals.

Implications for Practice: The international significance of these findings for practice includes its demonstration of the multifaceted symptom experience of patients receiving chemotherapy and highlights the importance of rapid access to specialist cancer services for patients and their lay and professional carers. In addition, it demonstrates the capacity of helplines to identify gaps in professional skills and training.