Configuration of services: service design access to primary and secondary care

National Guideline Alliance (UK)

Configuration of services: service design access to primary and secondary care

Cerebral palsy in adults

Evidence review F2

NICE Guideline, No. 119

Authors

National Guideline Alliance (UK).

London: National Institute for Health and Care Excellence (NICE); 2019 Jan.

ISBN-13: 978-1-4731-3223-8

Barriers to access to primary and secondary care for adults with cerebral palsy

Review question

What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

Introduction

Adults with cerebral palsy have the same health requirements as other adults in terms of screening, diagnosis, monitoring and management, but may have additional requirements and face additional difficulties accessing these services. Barriers may be environmental, organizational, social, or due to complications of Cerebral Palsy. This review question analyses the clinical and cost effectiveness of how services are structured and delivered.

PICO table

Please see Table 1 for a summary of the mixed method protocol Population, Intervention, Comparison and Outcome (PICO – quantitative), and Population, Interest and Context (PICo – qualitative) characteristics of this review.

Table 1

Summary of the protocol (PICO table).

For full details see the review protocol in appendix A

Methods and process

This evidence review was developed using the methods and process described in Developing NICE guidelines: the manual 2014. Methods specific to this review question are described in the review protocol in appendix A and for a full description of the methods see supplementary document C.

Declaration of interests were recorded according to NICE’s 2014 conflicts of interest policy from May 2016 until April 2018. From April 2018 onwards they were recorded according to NICE’s 2018 conflicts of interest policy. Those interests declared until April 2018 were reclassified according to NICE’s 2018 conflicts of interest policy (see Interests Register).

Clinical evidence

Included studies

No studies providing quantitative evidence were identified.

A total of 15 qualitative studies were included in this review (Balandin 1997; Balandin 2006; Buzio 2002; Hemsley 2004; Hemsley 2008a; Hemsley 2008c; Hemsley 2008b; Hilberink 2007; Jonsson 2008; Morgan 2014; Mudge 2016; Nieuwenhuijsen 2008; Read 2015; Russell 1993; Sandstrom 2009). Of them 3 used cross-sectional survey study designs (Hilberink 2007; Nieuwenhuijsen 2008; and Russell 1993), 11 qualitative study designs (Balandin 2006; Buzio 2002; Hemsley 2004; Hemsley 2008a; Hemsley 2008c; Hemsley 2008b; Jonsson 2008; Morgan 2014; Mudge 2016; Read 2015; and Sandstrom 2009), and 1 both cross-sectional survey study and qualitative design (Balandin 1997).

Twelve studies focused on adults with cerebral palsy (number of participants, N=566); 2 studies focused on family caregivers of adults with cerebral palsy (N=12); and 1 study focused on professional carers of people with cerebral palsy (N=6). The majority of included studies collected data by semi-structured interviews or focus groups. The most common data analysis method employed across studies was thematic analysis. With regard to the setting of studies:

9 studies were conducted in Australia (Balandin 1997; Balandin 2006; Buzio 2002; Hemsley 2004; Hemsley 2008a; Hemsley 2008c; Hemsley 2008b; Morgan 2014; and Russell 1993)
2 studies were conducted in Sweden (Jonsson 2008; and Sandstrom 2009)
2 studies were conducted in the Netherlands (Hilberink 2007; and Nieuwenhuijsen 2008)
1 study was conducted in New Zealand (Mudge 2016)
and 1 study was multinational, conducted in the UK, Australia, New Zealand, USA (Read 2015)

Table 2 provides a brief summary of the included studies.

Table 2 provides a summary of the included studies and evidence from these are summarised in the clinical evidence profiles below (Table 3 to Table 14).

See also the literature search strategy in appendix B, study selection flow chart in appendix C and study evidence tables in appendix D.

Excluded studies

Studies excluded from this systematic review, with reasons for their exclusion, are provided in appendix K.

Summary of clinical studies included in the evidence review

Table 2 provides a brief summary of the included studies.

Table 2

Summary of included studies.

See appendix D for the full evidence tables.

Quality assessment of clinical outcomes included in the evidence review

Three main concepts (i.e. predisposing factors; enabling resources; and factors that indicate a specific need) emerged from the thematic analysis (Figure 1) of the evidence included in the review. The three central concepts of thematic analysis describe conditions that either facilitate or impede healthcare utilisation:

Predisposing factors are defined as the socio-cultural characteristics of adults with cerebral palsy that are related to their adulthood (i.e. age, gender and education; ageing process; and health beliefs)
Enabling resources are defined as all the logistical aspects of obtaining care by adults with cerebral palsy (i.e. family carers; professional carers; health services availability and suitability; and logistical aspects of obtaining care)
Factors that indicate a specific need are defined as the most immediate cause of health service use by adults with cerebral palsy (i.e. needs perceived by patients; needs observed by professionals; information - communication needs; and need for an annual review/regular check-up)

As shown in the theme map (Figure 1), these concepts have been explored in a number of central themes and subthemes.

Theme map

Figure 1

Theme map.

Clinical evidence profile

According to the theme map (Figure 1), the clinical evidence (GRADE-CERQual) profiles for barriers and facilitators to access to primary and secondary care for adults with cerebral palsy are presented in Table 3 to Table 14.

Table 3. Clinical evidence profile: Predisposing factors of adults with cerebral palsy that are perceived as barriers to access to primary and secondary care: Socio-cultural characteristics (PDF, 262K)

Table 4. Clinical evidence profile: Predisposing factors of adults with cerebral palsy that are perceived as barriers to access to primary and secondary care: Ageing process (PDF, 272K)

Table 5. Clinical evidence profile: Predisposing factors of adults with cerebral palsy that are perceived as barriers to access to primary and secondary care: Health Beliefs (PDF, 281K)

Table 6. Clinical evidence profile: Enabling resources of adults with cerebral palsy that facilitate access to primary and secondary care: Unpaid/family carers (PDF, 306K)

Table 7. Clinical evidence profile: Enabling resources for adults with cerebral palsy that facilitate access to primary and secondary care: Professional carers attitudes (PDF, 295K)

Table 8. Clinical evidence profile: Enabling resources for adults with cerebral palsy that facilitate access to primary and secondary care: Health services availability & suitability (PDF, 275K)

Table 9. Clinical evidence profile: Enabling resources for adults with cerebral palsy that facilitate access to primary and secondary care: Logistical aspects of obtaining care (PDF, 272K)

Table 10. Clinical evidence profile: Factors that indicate a specific need of adults with cerebral palsy for access to primary and secondary care: Needs perceived from patients (PDF, 297K)

Table 11. Clinical evidence profile: Factors that indicate a specific need of adults with cerebral palsy for access to primary and secondary care: Needs perceived from patients (PDF, 297K)

Table 12. Clinical evidence profile: Factors that indicate a specific need of adults with cerebral palsy for access to primary and secondary care: Observed needs from professionals (PDF, 307K)

Table 13. Clinical evidence profile: Factors that indicate a specific need of adults with cerebral palsy for access to primary and secondary care: Information - communication needs (PDF, 314K)

Table 14. Clinical evidence profile: Factors that indicate a specific need of adults with cerebral palsy for access to primary and secondary care: Annual review/regular check-up (PDF, 246K)

Economic evidence

Included studies

A systematic review of the economic literature was conducted but no studies were identified which were applicable to this review question.

Excluded studies

No studies were identified which were applicable to this review question.

Summary of studies included in the economic evidence review

No economic evidence was identified for this review.

Economic model

This topic was not prioritised for health economic modelling because the topic was concerned with identifying barriers to access rather than considering alternative approaches to providing them. Such topics do not lend themselves well to economic modelling and therefore other topics in the guideline were prioritised.

Resource impact

No unit costs were presented to the committee as these were not prioritised for decision making purposes.

Evidence statements

The three central concepts (i.e. predisposing factors; enabling resources; and factors that indicate a specific need) describe conditions that either facilitate or impede healthcare utilisation in adults with cerebral palsy. These themes with subsequent subthemes are interlinked and have been perceived as facilitators or barriers by adults with cerebral palsy, and their carers (either unpaid or paid).

Predisposing factors

Very low quality evidence from 1 cross-sectional survey including 29 adults with cerebral palsy showed no relation between healthcare utilisation and age, gender or level of education.
Low quality evidence from 2 qualitative studies including 34 adults with cerebral palsy reported on the ageing process and the perceived need for self-advocacy and taking control. In particular, these studies showed that changes with ageing led many adults with cerebral palsy to reflect on a new or increased need for help.
Very low quality evidence from 2 qualitative studies including 307 adults with cerebral palsy reported on the ageing process and the perceived need of rethinking the future. In particular, these studies showed that many adults with cerebral palsy spoke about their future in terms of long-term goals around work, education, family, and sport.
Very low quality evidence from 1 qualitative study including 28 adults with cerebral palsy reported on health beliefs, with regard to perceived ‘acceptance of change’. In particular, this study showed that many adults with cerebral palsy were aware that as they got older they would experience accelerated changes.
Low quality evidence from 2 qualitative studies including 56 adults with cerebral palsy reported on health beliefs, with regard to perceived individual and social identity. In particular, these studies showed that changes in physical capacity and need in adults with cerebral palsy prompted reflection on their personal identity (i.e. how they saw themselves) and their social identity (i.e. how they were perceived by others)
Very low quality evidence from 1 qualitative study including 28 adults with cerebral palsy reported on health beliefs, with regard to perceived support-related stigma. In particular, this study showed that most adults with cerebral palsy believed stigma to be a fundamental reason why they might not seek the support needed.

Enabling resources

Moderate quality evidence from 5 qualitative studies including 32 adults with cerebral palsy, 12 family and 6 professional carers of adults with cerebral palsy reported on the role of family carers as facilitators of communication between professionals and adults with cerebral palsy. In particular, these studies showed that family carers were fundamental in speaking for the person with cerebral palsy and complex communication needs, and in advocating for the person with cerebral palsy and these needs.
Low quality evidence from 2 qualitative studies including 6 family carers and 6 professional carers of adults with cerebral palsy reported on the role of family carers as providers of information to professional carers about care techniques for the people cared for.
Moderate quality evidence from 3 qualitative studies including 6 adults with cerebral palsy, their family carers (n=6), and their professional carers (n=6) reported on the role of family carers as providers of emotional support (for example calm, reassure, and make feel secure) to adults with cerebral palsy.
Moderate quality evidence from 5 qualitative studies including 22 adults with cerebral palsy, 6 family cares and 6 professional carers of adults with cerebral palsy reported on the role of family carers as providers of practical support (for example giving medications, helping with showering or bathing, toileting, meals, and drinks) to adults with cerebral palsy.
Low quality evidence from 2 qualitative studies including 6 family carers and 6 professional carers of adults with cerebral palsy reported on the role of family carers as providers of advocacy to adults with cerebral palsy.
Moderate quality evidence from 5 qualitative studies including 66 adults with cerebral palsy reported on the perceived unsuccessful communication between professionals and adults with cerebral palsy and their family carers.
Low quality evidence from 3 qualitative studies including 50 adults with cerebral palsy reported on the perceived lack of awareness/knowledge of professionals about the problems associated with cerebral palsy.
Moderate quality evidence from 3 qualitative studies including 32 adults with cerebral palsy reported on the perceived lack of time of professionals to listen and support adults with cerebral palsy and their family carers.
Moderate quality evidence from 3 qualitative studies including 44 adults with cerebral palsy and 6 family carers of adults with cerebral palsy reported on the role of professional carers as facilitators of practical assistance to adult with cerebral palsy.
Very low quality evidence from 2 cross-sectional surveys including 32 adults with cerebral palsy reported on the observed and perceived access to specialist/generic services by adults with cerebral palsy. In particular, these studies showed that access to generic services was considered difficult by some adults with cerebral palsy, and impossible for some specialist services (e.g. speech pathology). The more frequently services visited in the past year were in order: physical therapy; rehabilitation therapy; hydrotherapy/swimming; and occupational therapy. The less frequently specialist visited in the past year was a dietician.
Low quality evidence from 2 qualitative studies including 28 adults with cerebral palsy reported on service factors perceived as prerequisites for carrying out physiotherapy and physical activity by adults with cerebral palsy (i.e. being enjoyable, giving effects, being comprehensible, and integrated in daily life).

Factors that indicate a specific need

Very low quality evidence from 1 qualitative study including 6 adults with cerebral palsy reported on the cost to access health services. In particular, this study showed that one major concern perceived by adults with cerebral palsy related to the cost associated with accessing the health service, with many people struggling to afford the fees.
Low quality evidence from 2 qualitative studies including 22 adults with cerebral palsy reported on their perceived transport and physical barriers (for example. car parking locations, stair access, or inability to navigate the narrow passageways and doorways) to access health services.
Low quality evidence from 2 qualitative studies including 12 family carers of adults with cerebral palsy reported on the logistical support needed by family carers of adults with cerebral palsy for accessing health services (for example. a formal system for provision of accommodation, car parking, meals or refreshments, access to the patient’s medical charts, and practical access to patients). In particular, these studies showed that improving logistical support may help the family carer to support the patient safely and effectively.
Very low quality evidence from 1 cross-sectional survey including 54 adults with cerebral palsy reported on the healthcare needs perceived by these people. In particular, this study showed that most adults with cerebral palsy usually felt healthy, about 25% indicated that their activities were limited by their health problems, and 33% felt worried about their health.
Very low quality evidence from 1 qualitative study including 6 adults with cerebral palsy reported on their perceived needs of maintaining control (in terms independence) and to manage any service/therapy provided.
Very low quality evidence from 1 qualitative study including 6 adults with cerebral palsy reported on the frustration (leading to fatigue) they felt when seeking appropriate and timely health services.
Very low quality evidence from 2 cross-sectional surveys including 83 adults with cerebral palsy reported on the healthcare needs observed by their professional carers. In particular, these studies showed that the most frequent conditions were (in order): pain, joint deformities, vision impairments, speech impairments, swallowing, and medication for epilepsy. Adults with cerebral palsy with pain more frequently consulted their rehabilitation physician compared with adults without pain. Adults with cerebral palsy and lower levels of gross motor functioning visited a rehabilitation physician and a physical therapist more than adults with cerebral palsy with higher levels of gross motor functioning
Very low quality evidence from 1 cross-sectional survey with including 83 adults with cerebral palsy reported on the relations between healthcare utilisation and cerebral palsy clinical features. In particular, this study showed that more adults with cerebral palsy with a quadriplegia compared to those with a hemiplegia visited a rehabilitation physician (or a physical therapist).
Very low quality evidence from 3 studies (2 qualitative studies, and 1 cross-sectional survey) including 83 adults with cerebral palsy reported on their perceived ways of information seeking. In particular, these studies showed that sources of information for adults with cerebral palsy and their carers include newspaper articles, magazine articles and health centre leaflets. Some adults with cerebral palsy gained information from the television or radio programs. Many people had the perception that a problem in their contacts with authorities could be that they were asked to speak more clearly, so that adults with cerebral palsy with speech difficulties avoided ringing them. Such adults with cerebral palsy considered the mobile phone text message function very facilitative, and used it frequently.
Moderate quality evidence from 3 qualitative studies including 16 adults with cerebral palsy and 6 family carers of adults with cerebral palsy reported on the lack of effective communication systems (leading to difficulties in communicating with professional carers – for example explaining methods for comfortable positioning, and gaining access to necessary assistance) perceived by these people.
Low quality evidence from 2 qualitative studies including 28 adults with cerebral palsy reported on the perceived lack of continuity between paediatric and adult health services (and the extended time required to establish a therapeutic relationship).
Low quality evidence from 2 studies (1 qualitative study, and 1 cross-sectional survey) including 35 adults with cerebral palsy reported the feeling of “abandonment” by the health service since becoming an adult.

The committee’s discussion of the evidence

Interpreting the evidence

The outcomes that matter most

The committee considered the individual opinions and views about barriers or facilitators and the themes emerging from these to be the critical outcomes. As they considered the evidence was likely to be qualitative in nature for this review the perspective of service users was felt to be the most important factor for decision making.

The quality of the evidence

moderate quality. The main concerns with regards to the quality of the evidence were selection bias and recruitment bias, lack of thematic saturation and lack of verification of findings.

The committee discussed that none of the studies included adults with cerebral palsy from England and Wales and were uncertain whether their findings were applicable and generalisable to all adults with cerebral palsy in the UK because international services differ in how they are provided.

The committee thought that, due to the uncertainty about methodological quality and data saturation on many of the findings in this review, the evidence should be interpreted with caution.

Benefits and harms

The committee noted, based on the evidence, that adults with cerebral palsy perceive many factors as barriers to access health and social care services. Identification and removal of these barriers to access wherever possible should improve health outcomes in this group and promote equality. The committee therefore recommended that these personal, physical, and organisational factors should be recognised and addressed (for example through training, support or advocacy). These also included social, infrastructure, service provision and communication between professionals and the adult with cerebral palsy and such barriers should be identified to determine what level of support is required (for example improving access to buildings, accessible transport, equipment and longer appointments). The evidence showed that many barriers were consistently reported by adults with cerebral palsy as causing problems. They agreed that when recognised, these factors must be managed by health professionals, in order to foster the access to health and social care services of adults with cerebral palsy. The committee discussed the evidence that adults with cerebral palsy often felt disadvantaged and therefore they recommended that barriers to primary and secondary care are removed to promote inclusivity. The lack of an an advocate where necessary for the adult with cerebral palsy, and lack of understanding of cerebral palsy by healthcare professionals were other themes that emerged from the evidence and were considered by the committee as potential impeding factors to access services. The committee noted that this could particularly be a problem for adults with cerebral palsy and complex needs who are admitted to hospital.

The committee acknowledged, based on the evidence, that showed that adults with cerebral palsy who were admitted to hospital experienced that family members were expected to act as their carers and advocates.. They would therefore not get the staff support and care that should be provided and carers may not always willing or able to give such support. The committee therefore decided that it was important to raise awareness so that advocacy and health and personal care should always be offered to people when they are admitted to hospital that.

The committee noted, based on their knowledge and experience, that informing adults with cerebral palsy about national screening programmes would help to reduce access inequalities in this group. The committee thought it was important to make healthcare professionals aware of this, therefore recommended provision of information about national screening services to adults with cerebral palsy to promote equal access. This would mean that more adults with cerebral palsy who may have a condition, for example cervical or breast cancer, would be treated in a timely manner and that this would therefore improve health outcomes.

Cost effectiveness and resource use

The committee noted that no relevant published economic evaluations had been identified and no additional economic analysis had been undertaken in this area. They agreed that these recommendations were unlikely to have a significant resource impact as most of the costs are already being incurred.

Other factors the committee took into account

The committee discussed the rights for disabled people that are legally binding under the Equality act (2010) and the UN Convention on the Rights of Persons with Disabilities. These describe requirements for access to services to enable adults with disabilities to live as autonomously as possible. The committee highlighted two particular articles related to access: Article 9 of the UN Convention specifically outlines the rights to accessibility which state ‘To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, including information and communications technologies and systems, and to other facilities and services open or provided to the public, both in urban and in rural areas. These measures, which shall include the identification and elimination of obstacles and barriers to accessibility….’. Article 25 on the topic of ‘Health’ states ‘Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation’. The committee’s recommendations are intended to reinforce this legislation.

References

Balandin 2007
Balandin, S., Hemsley, B., Sigafoos, J., Green, V., Communicating with nurses: The experiences of 10 adults with cerebral palsy and complex communication needs, Applied Nursing Research, 20, 56–62, 2007 [PubMed: 17481468]
Balandin 1997
Balandin, Susan, Morgan, John, Adults with cerebral palsy: What’s Happening?, Journal of Intellectual and Developmental Disability, 22, 109–124, 1997
Buzio 2002
Buzio, A., Morgan, J., Blount, D., The experiences of adults with cerebral palsy during periods of hospitalisation, Australian Journal of Advanced Nursing, 19, 8–14, 2002 [PubMed: 12118737]
Hemsley 2004
Hemsley, Bronwyn, Balandin, Susan, Without AAC: The Stories of Unpaid Carers of Adults with Cerebral Palsy and Complex Communication Needs in Hospital, AAC: Augmentative and Alternative Communication, 20, 243–257, 2004
Hemsley 2008a
Hemsley, B., Balandin, S., Togher, L., ‘We need to be the centrepiece’: adults with cerebral palsy and complex communication needs discuss the roles and needs of family carers in hospital, Disability & Rehabilitation, 30, 1759–71, 2008 [PubMed: 18720108]
Hemsley 2008b
Hemsley, Bronwyn, Balandin, Susan, Togher, Leanne, Family caregivers discuss roles and needs in supporting adults with cerebral palsy and complex communication needs in the hospital setting, Journal of Developmental and Physical Disabilities, 20, 257–274, 2008
Hemsley 2008c
Hemsley, Bronwyn, Balandin, Susan, Togher, Leanne, Professionals’ views on the roles and needs of family carers of adults with cerebral palsy and complex communication needs in hospital, Journal of Intellectual and Developmental Disability, 33, 127–136, 2008 [PubMed: 18569400]
Hilberink 2007
Hilberink, S. R., Roebroeck, M. E., Nieuwstraten, W., Jalink, L., Verheijden, J. M. A., Stam, H. J., Health issues in young adults with cerebral palsy: Towards a life-span perspective, Journal of Rehabilitation Medicine, 39, 605–611, 2007 [PubMed: 17896051]
Jonsson 2008
Jonsson, G., Ekholm, J., Schult, M. L., The International Classification of Functioning, Disability and Health environmental factors as facilitators or barriers used in describing personal and social networks: a pilot study of adults with cerebral palsy, International Journal of Rehabilitation Research, 31, 119–29, 2008 [PubMed: 18467926]
Morgan 2014
Morgan, P., Pogrebnoy, D., McDonald, R., Health service experiences to address mobility decline in ambulant adults ageing with cerebral palsy, Journal of Intellectual & Developmental Disability, 39, 282–289, 2014
Mudge 2016
Mudge, S., Rosie, J., Stott, S., Taylor, D., Signal, N., McPherson, K., Ageing with cerebral palsy; What are the health experiences of adults with cerebral palsy? A qualitative study, BMJ Open, 6 (10) (no pagination), 2016 [PMC free article: PMC5073482] [PubMed: 27737885]
Nieuwenhuijsen 2008
Nieuwenhuijsen, Channah, van der Laar, Yvette, Donkervoort, Mireille, Nieuwstraten, Wilbert, Roebroeck, Marij E., Stam, Henk J., Unmet needs and health care utilisation in young adults with cerebral palsy, Disability and Rehabilitation: An International, Multidisciplinary Journal, 30, 1254–1262, 2008 [PubMed: 18821192]
Read 2015
Read, S. A., Morton, T. A., Ryan, M. K., Negotiating identity: a qualitative analysis of stigma and support seeking for individuals with cerebral palsy, Disability & Rehabilitation, 37, 1162–9, 2015 [PubMed: 25176001]
Russell 1993
Russell, G. M., Kinirons, M. J., A study of the barriers to dental care in a sample of patients with cerebral palsy, Community Dental Health, 10, 57–64, 1993 [PubMed: 8495394]
Sandstrom 2009
Sandstrom, K., Samuelsson, K., Oberg, B., Prerequisites for carrying out physiotherapy and physical activity - experiences from adults with cerebral palsy, Disability & Rehabilitation, 31, 161–9, 2009 [PubMed: 18608404]

Appendices

Appendix A. Review protocols

Review protocols for review question F2: What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

Table 15. Review protocol for F2 Barriers to access to primary and secondary care for adults with cerebral palsy (PDF, 324K)

Appendix B. Literature search strategies

Literature search strategies for review question F2: What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

Database: Medline & Embase (Multifile)

Database(s): Embase 1974 to 2018 March 22, Ovid MEDLINE(R) In-Process & Other Non-Indexed Citations and Ovid MEDLINE(R) 1946 to Present, PsycINFO 1806 to August Week 4 2017

Table 16. Last searched on 22/03/2018

Database: Cochrane Library

Table 17. Last searched on 22/03/2018

Database: Web of Science

Table 18. Last searched on 22/03/2018

Appendix C. Clinical evidence study selection

Clinical evidence study selection for review question F2: What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

Figure 2. Flow diagram of clinical article selection for access to care review

Appendix D. Clinical evidence tables

Clinical evidence tables for review question F2: What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

Table 19. Studies included in the evidence review for access to care (PDF, 883K)

Appendix E. Forest plots

Forest plots for review question F2: What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

There are no forest plots for this topic.

Appendix F. GRADE tables

GRADE tables for review question F2: What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

See full GRADE-CERQual in the body of the evidence review.

Appendix G. Economic evidence study selection

Economic evidence study selection for review question F2: What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

No economic evidence was identified.

Appendix H. Economic evidence tables

Economic evidence tables for review question F2: What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

No economic evidence was identified for this review.

Appendix I. Health economic evidence profiles

Health economic evidence profiles for review question F2: What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

No economic evidence was identified for this review.

Appendix J. Health economic analysis

Health economic analysis for review question F2: What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

This is not applicable because no economic analysis was conducted for this review.

Appendix K. Excluded studies

Clinical and economic lists of excluded studies for review question F2: What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

Clinical studies

Table 20. Excluded clinical studies for access to care (PDF, 302K)

Economic studies

No economic evidence was identified for this review.

Appendix L. Research recommendations

Research recommendations for review question F2: What service configuration and what interventions can facilitate access to health care in adults with cerebral palsy, and what are the perceived barriers and facilitators for access to care in adults with cerebral palsy?

No research recommendation was made for this topic.

Final

Evidence reviews

These evidence reviews were developed by the National Guideline Alliance, hosted by the Royal College of Obstetricians and Gynaecologists

Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.

Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.

NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.

Bookshelf ID: NBK578082PMID: 35192271

Table 1Summary of the protocol (PICO table)

Population	Quantitative population: Adults aged 25 years or older with cerebral palsy Qualitative population: Adults aged 25 years or older with cerebral palsy Primary carers of adults aged 25 years or older with cerebral palsy Providers of care to adults aged 25 years or older with cerebral palsy
Intervention / Interest	Quantitative: Interventions to facilitate access to care services Primary care Comprehensive therapy services at day care centre level Key worker Annual review Shared information Patient held Electronic care records Advocacy and health literacy Qualitative interest: Interest in perceived barriers
Comparison/Context	Quantitative comparisons: None of these Each other Qualitative context: Access to primary or secondary care
Outcome	Critical quantitative outcomes: Service availability Utilisation of services Secondary care services Social care Primary care surveillance Dental Critical qualitative themes: Perceived barriers or facilitators to health care, for example: Personal Organisational Financial

Table 2Summary of included studies

Study	Design	Participants	Outcomes - Themes/categories
Balandin 2007	Qualitative Questionnaire delivered by mail and thematic analysis	N = 279 Adults with cerebral palsy Sample age = range: 30–74 years Male/Female (N) = 136/137 GMFCS 1/2/3/4–5 (N) = N/R Australia	Professional attitudes Health services availability and suitability Needs perceived from patients Information - communication needs
Balandin 1997	Qualitative Semi-structured interviews and thematic analysis	N = 10 Adults with cerebral palsy Sample age = range: 35–61 years Male/Female (N) = 5/5 GMFCS 1/2/3/4–5 (N) = N/R Australia	Role of unpaid/family carers Professional attitudes Information - communication needs
Buzio 2002	Qualitative Self-administered questionnaire. Data were analysed by means of a descriptive content analysis.	N = 31 Adults with cerebral palsy Sample age = range: 20–60 years Male/Female (N) = 18/13 GMFCS 1/2/3/4–5 (N) = N/R Australia	Health services availability and suitability Professional attitudes Logistical aspects of obtaining care
Hemsley 2004	Qualitative Unstructured interviews (in depth) lasting 1–2 hours, audiotaped and transcribed.	N = 6 Family carers of adults with cerebral palsy Sample age = N/R Male/Female (N) = 3/3 GMFCS 1/2/3/4–5 (N) = N/A Australia	Role of unpaid/family carers Professional attitudes Logistical aspects of obtaining care
Hemsley 2008a	Qualitative Focus groups and thematic analysis	N = 6 Adults with cerebral palsy Sample age = range: 39–58 years Male/Female (N) = 3/3 GMFCS 1/2/3/4–5 (N) = N/R Australia	Role of unpaid/family carers Professional attitudes
Hemsley 2008b	Qualitative Focus groups lasting 2 hours and videotaped, transcribed verbatim and analysed for content themes.	N = 6 Family carers of adults with cerebral palsy Sample age = range: 32–68 years Male/Female (N) = 2/4 (5 parents and 1 brother) GMFCS 1/2/3/4–5 (N) = N/A Australia	Role of unpaid/family carers Logistical aspects of obtaining care
Hemsley 2008c	Qualitative Focus groups lasting 2 hours and videotaped, transcribed verbatim and analysed for content themes.	N = 6 Professional carers of people with cerebral palsy Sample age = range: 27–62 years (mean 43 years) Male/Female (N) = 1/5 GMFCS 1/2/3/4–5 (N) = N/A Australia	Role of unpaid/family carers Professional attitudes
Hilberink 2007	Qualitative Semi structured interviews (open ended questions) along physical examinations. Data were analysed as frequencies by means of descriptive statistics	N = 54 Adults with cerebral palsy Sample age = range: 25–36 years Male/Female (N) = 26/28 GMFCS 1/2/3/4–5 (N) = 15/35/4/17 The Netherlands	Health services availability Needs perceived from patients Physical and medical needs
Jonsson 2008	Qualitative Both structured and semi-structured interviews. Data were analysed by means a quantitative descriptive analysis.	N = 16 Adults with cerebral palsy Sample age = range: 23–61 years (mean 32 years) Male/Female (N) = 7/9 GMFCS 1/2/3/4–5 (N) = N/R Sweden	Role of unpaid/family carers Professional attitudes Logistical aspects of obtaining car
Morgan 2014	Qualitative Semi structured interviews (open ended questions) and thematic analysis	N = 6 Adults with cerebral palsy Sample age = range: 35–52 years (mean 46 years) Male/Female (N) = 6/0 GMFCS 1/2/3/4–5 (N) = 0/3/3/0 Australia	Professional attitudes Health services availability and suitability Logistical aspects of obtaining care Needs perceived from patients Annual review/regular check-up
Mudge 2016	Qualitative Face-to-face semi structured interviews with data coded and interpreted by grouping information into categories.	N = 28 Adults with cerebral palsy Sample age = range: 37–70 years (mean 47 years) Male/Female (N) = 14/14 GMFCS 1/2/3/4–5 (N) = 0/5/8/15 New Zealand	Ageing process Health Beliefs Professional attitudes
Nieuwenhuijsen 2008	Qualitative Postal questionnaires. Data were analysed by means of descriptive statistics	N = 29 adults with cerebral palsy Sample age = range: 16–40 years (mean 28 years) Male/Female (N) = 19/10 GMFCS 1/2/3/4–5 (N) = 15/4/3/7 The Netherlands	Education, ageing and socio-cultural characteristics Health services availability and suitability Physical and medical needs Annual review/regular check-up Information - communication needs
Read 2015	Qualitative Open-ended questions within an online survey that was advertised through a number of social networking pages aimed at people with CP.	N = 28 Adults with cerebral palsy Sample age = range: 17–58 years (mean 32 years) Male/Female (N) = 5/22 GMFCS 1/2/3/4–5 (N) = 6/13/6/3 Country (N): UK=15; USA=6; Australia=6; New Zealand=1	Health Beliefs Professional attitudes
Russell 1993	Qualitative 12 item closed questionnaire and descriptive content analysis	N = 57 people with cerebral palsy Sample age =range: 16–50 years Male/Female (N) =35/22 GMFCS 1/2/3/4–5 (N) =N/A Australia	Logistical aspects of obtaining care Perceived barriers and regularity of dental attendance
Sandstrom 2009	Qualitative Semi structured interviews (open ended questions). The data was analysed using qualitative content analysis	N = 22 Adults with cerebral palsy Sample age = range: 35–58 years (mean 47 years) Male/Female (N) = 12/10 GMFCS 1/2/3/4–5 (N) = 0/7/7/8 Sweden	Health services suitability Annual review/regular check-up

: GMFCS: Gross Motor Function Classification System; N: number of participants in study; N/A: not available; N/R: not reported.

Figure 1Theme map

Table 16Last searched on 22/03/2018

#	Searches
1	exp Cerebral Palsy/ use prmz
2	exp cerebral palsy/ use oemezd
3	exp Cerebral Palsy/ use psyh
4	((cerebral or brain or central) adj2 (pal* or paralys#s or pares#s)).tw.
5	cerebral palsy.ti,ab.
6	little? disease.tw.
7	((hemipleg* or dipleg* or tripleg* or quadripleg* or unilateral) adj5 spastic).tw.
8	((hemipleg* or dipleg* or tripleg* or quadripleg* or unilateral) adj3 ataxi).tw.
9	or/1–8
10	limit 9 to english language
11	limit 10 to (adult <18 to 64 years> or aged <65+ years>) use oemezd [Limit not valid in Ovid MEDLINE(R),Ovid MEDLINE(R) In-Process,PsycINFO; records were retained]
12	limit 10 to “all adult (19 plus years)” [Limit not valid in Embase,PsycINFO; records were retained]
13	12 use prmz
14	limit 10 to adulthood <18+ years> [Limit not valid in Embase,Ovid MEDLINE(R),Ovid MEDLINE(R) In-Process; records were retained]
15	14 use psyh
16	or/11,13,15
17	exp Aging/ or exp Ambulatory Care/ or exp “Attitude of Health Personnel”/ or exp Choice Behavior/ or exp Communication/ or exp Community Health Services/ or exp Consumer Behavior/ or exp Decision Making/ or exp Disability Evaluation/ or exp Educational Status/ or exp Family Health/ or exp Patient-Centered Care/ or exp Professional-Family Relations/ or exp Health Knowledge, Attitudes, Practice/ or exp Health Planning/ or exp Health Services/ or exp Health Status/ or exp Health Status Disparities/ or exp Health Services Accessibility/ or exp Health Policy/ or exp “Delivery of Health Care”/ or exp Women’s Health/ or exp Attitude to Health/ or exp “Patient Acceptance of Health Care”/ or exp Help-Seeking Behavior/ or exp Insurance, Hospitalization/ or exp Patient Readmission/ or exp Hospitalization/ or exp Family Practice/ or exp Logistic Models/ or exp “Surveys and Questionnaires”/ or exp “Outcome and Process Assessment (Health Care)”/ or exp Primary Health Care/ or exp Quality Indicators, Health Care/ or exp “Quality of Health Care”/ or exp Treatment Refusal/ or exp Patient Compliance/ or exp Counseling/ or exp Medication Adherence/ or exp Behavior Therapy/ or exp Mobility Limitation/ or exp Mental Health Services/ or exp “Health Services Needs and Demand”/ or exp Needs Assessment/ or exp Community Mental Health Services/ or exp Health Services Research/ or exp Outpatients/ or exp Personal Autonomy/ or exp Physical Fitness/ or exp “Referral and Consultation”/ or exp “Physical and Rehabilitation Medicine”/ or exp Rehabilitation Centers/ or exp Rehabilitation/ or exp Personal Satisfaction/ or exp Insurance Coverage/ or exp Self Care/ or exp Public Policy/ or exp “Severity of Illness Index”/ or exp Social Adjustment/ or exp Social Isolation/ or exp Social Support/ or exp Socioeconomic Factors/ or exp Student Dropouts/ or exp Policy/ or exp Disabled Persons/ or Physicians/st [Standards]
18	17 use prmz
19	exp aging/ or exp daily life activity/ or exp ambulatory care/ or exp health personnel attitude/ or exp interpersonal communication/ or exp community care/ or exp consumer attitude/ or exp disability/ or exp family health/ or exp family centered care/ or exp family nursing/ or exp patient care/ or exp attitude to health/ or exp health status/ or exp health disparity/ or exp decision making/ or exp social support/ or exp adaptive behavior/ or exp help seeking behavior/ or exp patient attitude/ or exp cooperation/ or exp educational status/ or exp health behavior/ or exp social aspect/ or exp hospitalization/ or exp independence/ or exp primary medical care/ or exp health insurance/ or exp patient referral/ or exp medical specialist/ or exp health care access/ or exp hospital/ or exp statistical model/ or exp outcome assessment/ or exp health care quality/ or exp quality control/ or exp medication compliance/ or exp walking difficulty/ or exp health service/ or exp health care need/ or exp needs assessment/ or exp “organization and management”/ or exp health services research/ or exp mental health service/ or exp health care organization/ or exp health care delivery/ or exp outpatient care/ or exp personal autonomy/ or exp rehabilitation medicine/ or exp fitness/ or exp physician/ or exp patient referral/ or exp rehabilitation care/ or exp rehabilitation/ or exp life satisfaction/ or exp satisfaction/ or exp patient satisfaction/ or exp public health service/ or exp financial management/ or exp income/ or exp health care policy/ or exp insurance/ or exp self care/ or exp “severity of illness index”/ or exp social adaptation/ or exp social isolation/ or exp socioeconomics/ or exp school dropout/ or exp questionnaire/ or exp health care planning/ or exp wellbeing/ or exp women’s health/ or exp treatment refusal/ or exp patient compliance/ or exp counseling/ or exp policy/ or exp disabled person/
20	19 use oemezd
21	exp aging/ or exp outpatient treatment/ or exp health knowledge/ or exp health attitudes/ or exp mental health personnel/ or exp health education/ or exp knowledge level/ or exp primary health care/ or exp health care services/ or exp health personnel/ or exp health personnel attitudes/ or exp disabilities/ or exp choice behavior/ or exp communication skills training/ or exp augmentative communication/ or exp communication barriers/ or exp interpersonal communication/ or exp communication/ or exp communication skills/ or exp health care delivery/ or exp health service needs/ or exp community mental health services/ or exp “quality of care”/ or exp community services/ or exp health care utilization/ or exp health/ or exp mental health services/ or exp community health/ or exp health care policy/ or exp hospitals/ or exp consumer behavior/ or exp disability evaluation/ or exp education/ or exp family/ or exp decision making/ or exp patients/ or exp treatment planning/ or exp client centered therapy/ or exp client satisfaction/ or exp client attitudes/ or exp caregivers/ or exp therapist attitudes/ or exp health disparities/ or exp government policy making/ or exp health insurance/ or exp stigma/ or exp health care seeking behavior/ or exp treatment compliance/ or exp hospital admission/ or exp family physicians/ or exp item response theory/ or exp questionnaires/ or exp surveys/ or exp treatment effectiveness evaluation/ or exp treatment refusal/ or exp compliance/ or exp counseling/ or exp behavior therapy/ or exp physical activity/ or exp physical mobility/ or exp needs assessment/ or exp hospitalized patients/ or exp health care costs/ or exp hospitalization/ or exp outpatients/ or exp autonomy/ or exp “independence (personality)”/ or exp well being/ or exp “activities of daily living”/ or exp physical fitness/ or exp professional referral/ or exp professional consultation/ or exp rehabilitation/ or exp rehabilitation centers/ or exp life satisfaction/ or exp satisfaction/ or exp health insurance/ or exp self-care skills/ or exp self-management/ or exp “severity (disorders)”/ or exp social adjustment/ or exp social isolation/ or exp social support/ or exp socioeconomic status/ or exp disability laws/ or exp “disabled (attitudes toward)”/ or exp disability discrimination/
22	21 use psyh
23	(barrier* or limit* or access* or utili* or need* or exclusion* or exclude* or inclusion or include* or well?being or isolat* or support* or service* or health or service* or work* or educat* or financ* or leisure or recreat* or cultur* or social or adjust* or earn* or insurance or challeng* or satisf* or rehabilitat* or fitness or sport* or care* or plan* or independen* or disparit* or attitud* or family?centred or contact* or time* or consult* or insufficien* or participat* or connect* or discriminat* or stigma or inequalit* or policy or policies or knowledge or equipment* or information* or communicat* or interact* or appointment* or examination* or space or treatment room* or wheelchair* or visual aid* or assist* or physical therap* or dental* or wellness or legislative or government).ti,ab.
24	(“Health and Social Care Act” or “Care Bill”).ti,ab.
25	18 or 20 or 22 or 23 or 24
26	16 and 25
27	conference abstract.pt. use oemezd
28	letter.pt. or LETTER/ use oemezd
29	Letter/ use prmz
30	EDITORIAL/ use prmz
31	editorial.pt. use oemezd
32	NEWS/ use prmz
33	exp HISTORICAL ARTICLE/ use prmz
34	note.pt. use oemezd
35	ANECDOTES AS TOPIC/ use prmz
36	COMMENT/ use prmz
37	CASE REPORT/ use prmz
38	CASE REPORT/ use oemezd
39	CASE STUDY/ use oemezd
40	(letter or comment* or abstracts).ti.
41	or/27–40
42	RANDOMIZED CONTROLLED TRIAL/ use prmz
43	RANDOMIZED CONTROLLED TRIAL/ use oemezd
44	random*.ti,ab.
45	or/42–44
46	41 not 45
47	ANIMALS/ not HUMANS/ use prmz
48	ANIMAL/ not HUMAN/ use oemezd
49	exp ANIMALS, LABORATORY/ use prmz
50	exp ANIMAL EXPERIMENTATION/ use prmz
51	exp MODELS, ANIMAL/ use prmz
52	exp RODENTIA/ use prmz
53	NONHUMAN/ use oemezd
54	exp ANIMAL EXPERIMENT/ use oemezd
55	exp EXPERIMENTAL ANIMAL/ use oemezd
56	ANIMAL MODEL/ use oemezd
57	exp RODENT/ use oemezd
58	(rat or rats or mouse or mice).ti.
59	or/46–58
60	26 not 59

Table 17Last searched on 22/03/2018

ID	Search
#1	MeSH descriptor: [Cerebral Palsy] explode all trees
#2	((cerebral or brain or central) N2 (pal* or paralys?s or pare?s))
#3	((hemipleg* or dipleg* or tripleg* or quadripleg* or unilateral) N5 spastic)
#4	((hemipleg* or dipleg* or tripleg* or quadripleg* or unilateral) N3 ataxi)
#5	#1 or #2 or #3 or #4
#6	MeSH descriptor: [Delivery of Health Care] explode all trees
#7	MeSH descriptor: [Health Services Administration] explode all trees
#8	MeSH descriptor: [Models, Organizational] explode all trees
#9	MeSH descriptor: [Logistic Models] explode all trees
#10	MeSH descriptor: [Community Health Services] explode all trees
#11	MeSH descriptor: [Health Services Research] explode all trees
#12	MeSH descriptor: [Health Services Accessibility] explode all trees
#13	MeSH descriptor: [Health Education] explode all trees
#14	MeSH descriptor: [Health Care Rationing] explode all trees
#15	MeSH descriptor: [Health Personnel] explode all trees
#16	MeSH descriptor: [Attitude of Health Personnel] explode all trees
#17	MeSH descriptor: [Patient Care Team] explode all trees
#18	MeSH descriptor: [Health Status Indicators] explode all trees
#19	MeSH descriptor: [Health Status] explode all trees
#20	MeSH descriptor: [Health Status Disparities] explode all trees
#21	MeSH descriptor: [Health Planning] explode all trees
#22	MeSH descriptor: [Rehabilitation Centers] explode all trees
#23	MeSH descriptor: [Physical and Rehabilitation Medicine] explode all trees
#24	MeSH descriptor: [Aging] explode all trees
#25	MeSH descriptor: [Rehabilitation] explode all trees
#26	MeSH descriptor: [Continuity of Patient Care] explode all trees
#27	MeSH descriptor: [Professional-Family Relations] explode all trees
#28	MeSH descriptor: [Primary Health Care] explode all trees
#29	MeSH descriptor: [Patient Acceptance of Health Care] explode all trees
#30	MeSH descriptor: [Quality of Health Care] explode all trees
#31	MeSH descriptor: [Quality Indicators, Health Care] explode all trees
#32	MeSH descriptor: [Quality of Life] explode all trees
#33	MeSH descriptor: [Mental Health Services] explode all trees
#34	MeSH descriptor: [Health Services Needs and Demand] explode all trees
#35	MeSH descriptor: [Needs Assessment] explode all trees
#36	MeSH descriptor: [Community Mental Health Services] explode all trees
#37	MeSH descriptor: [Public Policy] explode all trees
#38	MeSH descriptor: [Health Policy] explode all trees
#39	MeSH descriptor: [Standard of Care] explode all trees
#40	MeSH descriptor: [Professional Practice] explode all trees
#41	MeSH descriptor: [Utilization Review] explode all trees
#42	MeSH descriptor: [State Medicine] explode all trees
#43	MeSH descriptor: [Social Support] explode all trees
#44	MeSH descriptor: [Social Work] explode all trees
#45	MeSH descriptor: [Health Knowledge, Attitudes, Practice] explode all trees
#46	MeSH descriptor: [Educational Status] explode all trees
#47	MeSH descriptor: [Student Dropouts] explode all trees
#48	MeSH descriptor: [Employment] explode all trees
#49	MeSH descriptor: [Financing, Government] explode all trees
#50	MeSH descriptor: [National Health Programs] explode all trees
#51	MeSH descriptor: [Referral and Consultation] explode all trees
#52	MeSH descriptor: [Hospitalization] explode all trees
#53	MeSH descriptor: [Disability Evaluation] explode all trees
#54	MeSH descriptor: [Disease Management] explode all trees
#55	MeSH descriptor: [Disabled Persons] explode all trees
#56	MeSH descriptor: [Severity of Illness Index] explode all trees
#57	MeSH descriptor: [Transportation of Patients] explode all trees
#58	MeSH descriptor: [Patient Preference] explode all trees
#59	MeSH descriptor: [Outcome and Process Assessment (Health Care)] explode all trees
#60	MeSH descriptor: [Activities of Daily Living] explode all trees
#61	MeSH descriptor: [Self Care] explode all trees
#62	MeSH descriptor: [Ambulatory Care] explode all trees
#63	MeSH descriptor: [Home Care Services] explode all trees
#64	MeSH descriptor: [Complementary Therapies] explode all trees
#65	MeSH descriptor: [Recreation] explode all trees
#66	MeSH descriptor: [Leisure Activities] explode all trees
#67	MeSH descriptor: [Age Factors] explode all trees
#68	MeSH descriptor: [Life Style] explode all trees
#69	MeSH descriptor: [Transition to Adult Care] explode all trees
#70	MeSH descriptor: [Socioeconomic Factors] explode all trees
#71	MeSH descriptor: [Social Adjustment] explode all trees
#72	MeSH descriptor: [Social Isolation] explode all trees
#73	MeSH descriptor: [Aftercare] explode all trees
#74	MeSH descriptor: [Physical Therapy Modalities] explode all trees
#75	MeSH descriptor: [Choice Behavior] explode all trees
#76	MeSH descriptor: [Counseling] explode all trees
#77	MeSH descriptor: [Communication] explode all trees
#78	MeSH descriptor: [Consumer Behavior] explode all trees
#79	MeSH descriptor: [Decision Making] explode all trees
#80	MeSH descriptor: [Family Health] explode all trees
#81	MeSH descriptor: [Family Practice] explode all trees
#82	MeSH descriptor: [Women’s Health] explode all trees
#83	MeSH descriptor: [Attitude to Health] explode all trees
#84	MeSH descriptor: [Patient Acceptance of Health Care] explode all trees
#85	MeSH descriptor: [Help-Seeking Behavior] explode all trees
#86	MeSH descriptor: [Insurance, Hospitalization] explode all trees
#87	MeSH descriptor: [Patient Readmission] explode all trees
#88	MeSH descriptor: [Hospitalization] explode all trees
#89	MeSH descriptor: [Surveys and Questionnaires] explode all trees
#90	MeSH descriptor: [Treatment Refusal] explode all trees
#91	MeSH descriptor: [Patient Compliance] explode all trees
#92	MeSH descriptor: [Medication Adherence] explode all trees
#93	MeSH descriptor: [Behavior Therapy] explode all trees
#94	MeSH descriptor: [Mobility Limitation] explode all trees
#95	MeSH descriptor: [Outpatients] explode all trees
#96	MeSH descriptor: [Personal Autonomy] explode all trees
#97	MeSH descriptor: [Physical Fitness] explode all trees
#98	MeSH descriptor: [Personal Satisfaction] explode all trees
#99	MeSH descriptor: [Insurance Coverage] explode all trees
#100	MeSH descriptor: [Physicians] explode all trees and with qualifier(s): [Standards - ST]
#101	barrier* or limit* or access* or utili* or need* or exclusion* or exclude* or inclusion or include* or well?being or isolat* or support* or service* or health or service* or work* or educat* or financ* or leisure or recreat* or cultur* or social or adjust* or earn* or insurance or challeng* or satisf* or rehabilitat* or fitness or sport* or care* or plan* or independen* or disparit* or attitud* or family?centred or contact* or time* or consult* or insufficien* or participat* or connect* or discriminat* or stigma or inequalit* or policy or policies or knowledge or equipment* or information* or communicat* or interact* or appointment* or examination* or space or treatment room* or wheelchair* or visual aid* or assist* or physical therap* or dental* or wellness or legislative or government or “Health and Social Care Act” or “Care Bill”
#102	{or #6–#101}
#103	#5 and #102

Table 18Last searched on 22/03/2018

#4	(#3) AND LANGUAGE: (English)
#3	#2 AND #1
#2	ts=barrier* or ts=limit* or ts=access* or ts=utili* or ts=need* or ts=exclusion* or ts=exclude* or ts=inclusion or ts= include* or ts=well?being or ts=isolat* or ts=support* or ts=service* or ts=health care service* or ts=work* or ts=educat* or ts=financ* or ts=leisure or ts=recreat* or ts=cultur* or ts=social or ts=adjust* or ts=earn* or ts=insurance or ts=challeng* or ts=satisf* or ts=rehabilitat* or ts=fitness or ts=sport* or ts=care* or ts=plan* or ts=independen* or ts=disparit* or ts=attitud* or ts=family?centred or ts=contact* or ts=time* or ts=consult* or ts=insufficien* or ts=participat* or ts=connect* or ts=discriminat* or ts=stigma or ts=inequalit* or ts=policy or ts=policies or ts=knowledge or ts=equipment* or ts=information* or ts=communicat* or ts=interact* or ts=appointment* or ts=examination* or ts=space or ts=treatment room* or ts=wheelchair* or ts=visual aid* or ts=assist* or ts=physical therap* or ts=physiotherapy* or ts=dental* or ts=wellness or ts=legislative or ts=government
#1	ts=cerebral palsy

Configuration of services: service design access to primary and secondary care

Authors

Barriers to access to primary and secondary care for adults with cerebral palsy

Review question

Introduction

PICO table

Table 1

Methods and process

Clinical evidence

Included studies

Excluded studies

Summary of clinical studies included in the evidence review

Table 2

Quality assessment of clinical outcomes included in the evidence review

Theme map

Figure 1

Clinical evidence profile

Economic evidence

Included studies

Excluded studies

Summary of studies included in the economic evidence review

Economic model

Resource impact

Evidence statements

Predisposing factors

Enabling resources

Factors that indicate a specific need

The committee’s discussion of the evidence

Interpreting the evidence

The outcomes that matter most

The quality of the evidence

Benefits and harms

Cost effectiveness and resource use

Other factors the committee took into account

References

Appendices

Appendix A. Review protocols

Appendix B. Literature search strategies

Database: Medline & Embase (Multifile)

Database: Cochrane Library

Database: Web of Science

Appendix C. Clinical evidence study selection

Appendix D. Clinical evidence tables

Appendix E. Forest plots

Appendix F. GRADE tables

Appendix G. Economic evidence study selection

Appendix H. Economic evidence tables

Appendix I. Health economic evidence profiles

Appendix J. Health economic analysis

Appendix K. Excluded studies

Clinical studies

Economic studies

Appendix L. Research recommendations

Table 1Summary of the protocol (PICO table)

Table 2Summary of included studies

Figure 1Theme map

Table 16Last searched on 22/03/2018

Table 17Last searched on 22/03/2018

Table 18Last searched on 22/03/2018

Figure 2Flow diagram of clinical article selection for access to care review